Well this week is just not going how I want it to go! First infusion which is pretty normal for me every 4 weeks, then a very late night with trying to save our cat, the death of our cat and then the grief and then a horrible episode that I sometimes have with my bowel. Because that can be all so personal, I won't go into details. However, it has left me debilitated the whole week. I can't drive the car, or walk properly, or bend down or lift things and I am feeling feverish. I know that on top of this I have an infusion reaction which already makes me feel hot, flushed, nauseated, tired and lethargic. Add grief for the cat and the very late night at 3am while trying to treat him.....and add this episode the next morning and I am feeling SO unwell it is not funny. In fact, I have been taking digesic for this terrible pain. One time I had one of these episodes I was in hospital having morphine. I have been trying to avoid that. However, I am feeling concerned that I am getting ferverish at times.......it could be just all a part of infusion reaction but I feel doubly worse and I am scared to get an infection from the episode (leave that up to your imagination ......hehe). So it looks like tomorrow Alan will ring my specialist and check if I should be on a course of antibiotics with the lower neutrophils to avoid unnecessary infection, especially since I am not feeling well at all.
I have not had an episode this bad for a long while and I forgot how long it takes to recover.....sometimes a week to a week and a half and this just happened to be a bad one and 4 days later I feel NO better at all! I am also more nauseated and having to take anti-emetics (anti-nausea). Usually with infusion I can manage to keep off those. Although last infusion I was so nauseated on one day I did take a maxolon. However, this is ridiculous. I crawl out of bed in the morning feeling horrible. It is normal to feel fatigued and like I didn't sleep with infusion but I feel even worse than usual and it has made me cry a bit.
Here I am complaining about this and brave Delia is in transplant putting up with a lot more. I feel like a wimp. Go gal! You are amazing!
I just think that this week has been an extra wipe out. I am still upset about the cat. I still feel like it is my fault for not noticing and I need to express this to deal with these feelings. Because of all that, I didn't get the rest needed after infusion....the first 2 days rest are critical for not a bad infusion reaction and then I had this episode and I am just real emotional. I know that I take death real hard. I know that after living a life with FA where you are fighting against death all the time, when it happens....even to an animal, I just start to cry and wail....which is exactly what I have been doing when Isaac is not around. The "absentnace"....not even a word I am sure....of Jerry our cat reminds me of what it was like to suddenly not have my brother around after he died a month after transplant. I hate this heaviness.......I don't like my environment to change and I have to admit that feeling those feelings that I so closely associate with my brother, Shannon, are scary and I hate reliving them. Yes, Jerry is a cat and not a human being but the grief still reminds me. It is different to a degree. Well it is different but then why am I so easily reminded and thrown back into those moments when we lost Shannon?
Last night I was up about 6 times with pretty severe pain. It made me feel really tired. Do you mind praying for me? I have seen prayer work lots of times in the last 3 to 4 months. Just today God did something special.
It has been a bit of a discouraging week even though there have been special moments.
I am a new Aunty! Did I tell you that? I will post some pictures of me and the baby! Baby Elizabeth. She is my second niece. That was a happy moment.
Well, I need some sleep. Thank you for your support guys. To be able to share with you really helps me work through things. I want to thank everyone who gave me support when our cat, Jerry died. It meant a lot.
Love Charisse
Showing posts with label health update. Show all posts
Showing posts with label health update. Show all posts
Wednesday, March 11, 2009
Friday, February 6, 2009
IVIG Infusion
Hi Guys,
well I had IVIG infusion yesterday. I felt quite nervous as I didn't have my port in due to the low neuts and I was afraid that the nurses would be cross with me as they have been in the past. I know, I know.....that shouldn't happen. I know they think that I am just stubborn at times and won't accept a port but this time I said "yes" and it was cancelled just before I was being taken in for the operation. I couldn't try harder than that. After that experience, I have had more chats and I don't think I should have this port and I believe God doesn't want it for me right now. The risk of infection for me it just too great right now and I believe God has been protecting me from that. I am SO well and hardly ever have serious infections. I agree with my haem about the risk of infections with a port for me when I have lower neuts and white blood cells. They have always been low......but my body is well adapted to it and I am well, pretty much, all the time.
A port really worries me and even when I was about to go into surgery, I didn't feel 100% comfortable. Lots of FA patients with ports have injections to get their neuts to normal levels or close to so infection isn't as bad a problem and with my pre-leukaemia, this is not advisable. If I am having no problems with a neut count between 500 and 1500, then why treat with something that is dangerous. However, the port can be a problem when I sit at 500 or 400 and have freak drops to 200.
I am so glad that Alicia is doing better now. I know she is vulerable after a transplant and has a different line in but it frightened me to hear that her very high temperature and difficulties and stay in ICU was caused by an infection to her line. I think her white blood cell and neuts are higher than mine and she got this infection! I can't imagine how my body would deal with things when I have lower neuts and white blood cells. I do know that recovering from a transplant makes you vulnerable though. Michelle, we are praying for Alicia.
Anyway, the nurses seemed to handle the "no port" well yesterday and didn't yell or be pushy when they heard how a port can be more complicated for me. I do know that they wish I had a port though. I believe if God doesn't want me to have it for now, He will provide a solution. Miracles can happen and some supernatural stuff has been happening between God and my life which is way exciting. Why couldn't He heal my veins or cause me to not need IVIG for the rest of my life. Mircales do happen. You may not believe me if I told you the supernatural things happening in my life right now. What a joy to be a born-again Christian! When you ask for God to move in your life and tell Him you are serious, there is no end to what He can do and I know this is still only the beginning!
So to break out of my fear of using one vein I got them to experiment yesterday. I know my left arm is not good but there is a vein. It never gets used. Unfortunately, the nurse who was having a go yesterday was very tentative and I think the vein didn't pop up for her how it could have. Being a nurse myself, there are some things I would have changed about her technique for a difficult vein but I didn't want to tell her more than I was suggesting otherwise it is like I am taking over....hehe
So we ended up going for my right arm after she missed. It didn't even go in a vein. The usual nurse came then, who is a little more agressive but this is perfect for my veins. I showed her a place that I wanted which was close to the usual spot but a little further away to give the usual spot a rest and she did it! Yay! A tiny bit of bruising but at least that is all done for another month. I wait to see what God has in store. I don't feel too bad today. It is about 104 degrees F the last two days. For us Australians, that is 41 to 42 degrees Celsius. Today is a BIG fire warning day because of the intense wind and the hot weather. Tomorrow we are supposed to have a HUGE cool change! Yay!
So I told my head and neck oncologist about the problems with the surgeon and my head cancer site. He was "ozzed" as Alan and I would say. That means " thinks the surgeon is silly" but he said it in a real professional way. He doesn't want to waste time with a guy who is not going to take us seriously. So we are giving him one more go. I will make appointments with this surgeon every 3 weeks for my head. If my head is not acting up, I can cancel and if it is....I go and show him and he can't complain that I am trying to make him available to me 24 hours a day because I am making regular appoints so he can see. If this fails to work.....we are finding someone else. We don't have time to waste with someone who won't help and see the seriousness of keeping this under control.
We have been praying for my scar to be restored here at prayer meeting and if it doesn't act up again! That would be a miracle which wouldn't surprise me with the supernatural stuff going on.....good God stuff...... encourage you. If you want things to change in your life, call on Jesus....because He will do amazing supernatural things in your life. So many people are happy with life just going on as it is, the ocassional blessing.....but you can have so much more and I am just starting to learn that! My health is also being affected amazingly by God!!
Anyway, sorry....I am just excited! I still get down but have to remind myself about what God is doing.
ok, so that is all for today. Thanks for visiting and I will update you soon again!
Love Charisse
well I had IVIG infusion yesterday. I felt quite nervous as I didn't have my port in due to the low neuts and I was afraid that the nurses would be cross with me as they have been in the past. I know, I know.....that shouldn't happen. I know they think that I am just stubborn at times and won't accept a port but this time I said "yes" and it was cancelled just before I was being taken in for the operation. I couldn't try harder than that. After that experience, I have had more chats and I don't think I should have this port and I believe God doesn't want it for me right now. The risk of infection for me it just too great right now and I believe God has been protecting me from that. I am SO well and hardly ever have serious infections. I agree with my haem about the risk of infections with a port for me when I have lower neuts and white blood cells. They have always been low......but my body is well adapted to it and I am well, pretty much, all the time.
A port really worries me and even when I was about to go into surgery, I didn't feel 100% comfortable. Lots of FA patients with ports have injections to get their neuts to normal levels or close to so infection isn't as bad a problem and with my pre-leukaemia, this is not advisable. If I am having no problems with a neut count between 500 and 1500, then why treat with something that is dangerous. However, the port can be a problem when I sit at 500 or 400 and have freak drops to 200.
I am so glad that Alicia is doing better now. I know she is vulerable after a transplant and has a different line in but it frightened me to hear that her very high temperature and difficulties and stay in ICU was caused by an infection to her line. I think her white blood cell and neuts are higher than mine and she got this infection! I can't imagine how my body would deal with things when I have lower neuts and white blood cells. I do know that recovering from a transplant makes you vulnerable though. Michelle, we are praying for Alicia.
Anyway, the nurses seemed to handle the "no port" well yesterday and didn't yell or be pushy when they heard how a port can be more complicated for me. I do know that they wish I had a port though. I believe if God doesn't want me to have it for now, He will provide a solution. Miracles can happen and some supernatural stuff has been happening between God and my life which is way exciting. Why couldn't He heal my veins or cause me to not need IVIG for the rest of my life. Mircales do happen. You may not believe me if I told you the supernatural things happening in my life right now. What a joy to be a born-again Christian! When you ask for God to move in your life and tell Him you are serious, there is no end to what He can do and I know this is still only the beginning!
So to break out of my fear of using one vein I got them to experiment yesterday. I know my left arm is not good but there is a vein. It never gets used. Unfortunately, the nurse who was having a go yesterday was very tentative and I think the vein didn't pop up for her how it could have. Being a nurse myself, there are some things I would have changed about her technique for a difficult vein but I didn't want to tell her more than I was suggesting otherwise it is like I am taking over....hehe
So we ended up going for my right arm after she missed. It didn't even go in a vein. The usual nurse came then, who is a little more agressive but this is perfect for my veins. I showed her a place that I wanted which was close to the usual spot but a little further away to give the usual spot a rest and she did it! Yay! A tiny bit of bruising but at least that is all done for another month. I wait to see what God has in store. I don't feel too bad today. It is about 104 degrees F the last two days. For us Australians, that is 41 to 42 degrees Celsius. Today is a BIG fire warning day because of the intense wind and the hot weather. Tomorrow we are supposed to have a HUGE cool change! Yay!
So I told my head and neck oncologist about the problems with the surgeon and my head cancer site. He was "ozzed" as Alan and I would say. That means " thinks the surgeon is silly" but he said it in a real professional way. He doesn't want to waste time with a guy who is not going to take us seriously. So we are giving him one more go. I will make appointments with this surgeon every 3 weeks for my head. If my head is not acting up, I can cancel and if it is....I go and show him and he can't complain that I am trying to make him available to me 24 hours a day because I am making regular appoints so he can see. If this fails to work.....we are finding someone else. We don't have time to waste with someone who won't help and see the seriousness of keeping this under control.
We have been praying for my scar to be restored here at prayer meeting and if it doesn't act up again! That would be a miracle which wouldn't surprise me with the supernatural stuff going on.....good God stuff...... encourage you. If you want things to change in your life, call on Jesus....because He will do amazing supernatural things in your life. So many people are happy with life just going on as it is, the ocassional blessing.....but you can have so much more and I am just starting to learn that! My health is also being affected amazingly by God!!
Anyway, sorry....I am just excited! I still get down but have to remind myself about what God is doing.
ok, so that is all for today. Thanks for visiting and I will update you soon again!
Love Charisse
Thursday, January 29, 2009
Visit to Surgeon
Hi All,
I had the most frustrating appointment today with the surgeon who removed the cancer from my head!
I am VERY disappointed in this doctor and I actually don't think he knows much and he definitely never seems to think for himself in my case! I am SO fed up and certainly don't think much of him. He may be good with his scalpel but he has many faults!
The last 4 months or so I have been having trouble with the scar on my head as you all know. There is a section of the scar that is weeping and really sore and doesn't look right. It comes and goes in cycles of 2 to 3 weeks. One minute it seems really healed and a normal scar and then all of a sudden it has stuff on it and weeps and seeps and becomes real bumpy which was kind of like how the other cancer started off but a bit different. After the head and neck oncologist watching this for 4 months, and Alan and I.....I have become concerned because the cancer I had has a high rate or reoccurring on the scalp and if it gets into the lymph nodes it can spread and it can be quite agressive. Of course, I don't want to do that and after the last cancer fooled us for 12 months, I don't want anything to get bad if it is a problem. The doctors thought the other thing was nothing to worry about and it ended up being some rare tumor! I am acting quick on this just in case.
3 weeks ago my head/neck oncologist told me that the surgeon needed to see it pronto because it looked very abnormal and he wanted to biopsy it and see what was going on. The surgeon could only get me in 3 weeks later and guess what? The scar has gone through its cycle and it looks normal now. I knew what the surgeon would say. Nothing to worry about and all normal. That happened when I showed him before Christmas when there was a tiny scab from its cycle but not looking crazy like. Well......not only did he think it was normal, he didn't seem to take into account the history or my doctor sending me there. He said that he wouldn't act on it with how it looks and he would be crazy to touch me unless he had some reason! So I said, rather urgently, that what should we do then......should we make an arrangement that I call him when it goes funny again and he get me in the next couple of days so he can see it because it is quite bad and unusual. This doctor sits there all high and mighty, hand on chin like and says NOTHING! He wasn't even concerned about the scar he said. I kept trying to tell him it goes yucky and my head/neck specialist was concerned and so was I and about FA and that people with FA can die from leaving something that looks suspicious. He still sat and said nothing. I am sorry but what an idiot!
I got upset and raised my voice.....didn't yell but got real assertive and told him that he will cause me to get into trouble with my health if he doesn't check this out. That if he has no idea how to keep my body safe, then I would be my own advocate. He then said, "I am not av available to you 24 hours a day you know!". What an idiot. What a bad attitude as a doctor.....no concern, no wanting to learn about something that could make him a good doctor. Can't even think for himself. He said, "all scars hurt you know". SO I did my, "I am a nurse and a patient who is verey aware" routine which I know they hate but they got to know they are not better than me and I know what I am doing for my health. No one is gonna pull their "high and mighty" trick with me when they have no clue! I told him that I knew that scars hurt but they DON'T WEEP or BLEED like mine was. He said, "no". A simple no. I also told him that as a nurse and as a patient I have a responsibility to myself. I think that he is not seeing what could be serious and all I am asking is that we look into it. So I will call him when it happens again and he will see me. In fact, I am going to get Alan to do it. Doctors never refuse him. I will go back to my head and neck specialist in a week and tell him the surgeon is not really co-operating and he said that if it gets real bad we will get a second opinion. I don't want to be cut open. I am not surgery happy but I do want to know why my cancer site is doing this and I don't want to be stupid.
When I asked, "can't you understand what I am saying?"...he just stared. However, the nurse in with me said in front of him, "Yes, I understand what you are saying and think you are making sense.....". Praise the Lord someone understands.
I feel cross now and it has been hours since the appointment. FA is hard enough without doctors making it extra difficult!
Phew! Thanks for letting me get that out. I am so tense. I am just trying to take care of myself *sigh*
So this sagga continues. I don't like going to new doctors when one knows your history already.
Anyway, that is my update. I have to get ready for a "Meet the teacher meeting" as Isaac starts year 1 on Monday! Wow!
Love you all,
Charisse
I had the most frustrating appointment today with the surgeon who removed the cancer from my head!
I am VERY disappointed in this doctor and I actually don't think he knows much and he definitely never seems to think for himself in my case! I am SO fed up and certainly don't think much of him. He may be good with his scalpel but he has many faults!
The last 4 months or so I have been having trouble with the scar on my head as you all know. There is a section of the scar that is weeping and really sore and doesn't look right. It comes and goes in cycles of 2 to 3 weeks. One minute it seems really healed and a normal scar and then all of a sudden it has stuff on it and weeps and seeps and becomes real bumpy which was kind of like how the other cancer started off but a bit different. After the head and neck oncologist watching this for 4 months, and Alan and I.....I have become concerned because the cancer I had has a high rate or reoccurring on the scalp and if it gets into the lymph nodes it can spread and it can be quite agressive. Of course, I don't want to do that and after the last cancer fooled us for 12 months, I don't want anything to get bad if it is a problem. The doctors thought the other thing was nothing to worry about and it ended up being some rare tumor! I am acting quick on this just in case.
3 weeks ago my head/neck oncologist told me that the surgeon needed to see it pronto because it looked very abnormal and he wanted to biopsy it and see what was going on. The surgeon could only get me in 3 weeks later and guess what? The scar has gone through its cycle and it looks normal now. I knew what the surgeon would say. Nothing to worry about and all normal. That happened when I showed him before Christmas when there was a tiny scab from its cycle but not looking crazy like. Well......not only did he think it was normal, he didn't seem to take into account the history or my doctor sending me there. He said that he wouldn't act on it with how it looks and he would be crazy to touch me unless he had some reason! So I said, rather urgently, that what should we do then......should we make an arrangement that I call him when it goes funny again and he get me in the next couple of days so he can see it because it is quite bad and unusual. This doctor sits there all high and mighty, hand on chin like and says NOTHING! He wasn't even concerned about the scar he said. I kept trying to tell him it goes yucky and my head/neck specialist was concerned and so was I and about FA and that people with FA can die from leaving something that looks suspicious. He still sat and said nothing. I am sorry but what an idiot!
I got upset and raised my voice.....didn't yell but got real assertive and told him that he will cause me to get into trouble with my health if he doesn't check this out. That if he has no idea how to keep my body safe, then I would be my own advocate. He then said, "I am not av available to you 24 hours a day you know!". What an idiot. What a bad attitude as a doctor.....no concern, no wanting to learn about something that could make him a good doctor. Can't even think for himself. He said, "all scars hurt you know". SO I did my, "I am a nurse and a patient who is verey aware" routine which I know they hate but they got to know they are not better than me and I know what I am doing for my health. No one is gonna pull their "high and mighty" trick with me when they have no clue! I told him that I knew that scars hurt but they DON'T WEEP or BLEED like mine was. He said, "no". A simple no. I also told him that as a nurse and as a patient I have a responsibility to myself. I think that he is not seeing what could be serious and all I am asking is that we look into it. So I will call him when it happens again and he will see me. In fact, I am going to get Alan to do it. Doctors never refuse him. I will go back to my head and neck specialist in a week and tell him the surgeon is not really co-operating and he said that if it gets real bad we will get a second opinion. I don't want to be cut open. I am not surgery happy but I do want to know why my cancer site is doing this and I don't want to be stupid.
When I asked, "can't you understand what I am saying?"...he just stared. However, the nurse in with me said in front of him, "Yes, I understand what you are saying and think you are making sense.....". Praise the Lord someone understands.
I feel cross now and it has been hours since the appointment. FA is hard enough without doctors making it extra difficult!
Phew! Thanks for letting me get that out. I am so tense. I am just trying to take care of myself *sigh*
So this sagga continues. I don't like going to new doctors when one knows your history already.
Anyway, that is my update. I have to get ready for a "Meet the teacher meeting" as Isaac starts year 1 on Monday! Wow!
Love you all,
Charisse
Tuesday, January 27, 2009
Counts
Hello All,
I hope you like my new background. Yep, I know, I know....the words are a little harder to read with this background...but I love the background and want to keep it for a while. Also, I chose it so that your eye muscles get a good work out....hehe...haha.....hehe. Sorry.....
I had my counts repeated on Wed last week and to my relief my platelet count has come up to my average. I practically hugged my doctor when I was told and felt SO relieved. I can tell you having it drop so low was scary and I hope it doesn't do that again.
As for my neuts (ANC), they are still low but climbing up again. On Wed they had gone up from 200 to 350 and I am usually over 500. So really I fluctuate between 500 and 1500. Normal is about 2000. Labs can differ with that normal. It was good to see the count climbing again and I will be much relieved when it is up again. They are not high enough to have a port inserted yet though.
As for the port, I am not sure I am going to have that done now. My haematologist was not too keen on it since the idea was presented. A bit of history. The nurses at the cancer center constantly hassel me about a port. I have difficult veins and the last year have had very sore veins. They get upset and don't want to prick me but also feel bad if they have numerous goes which is understandable. However, I have not ever felt comfortable about a port.
I have lowish neutrophils (fight infection). Often I hear of people with FA or bone marrow failure having neuopgen injections to increase their neutrophils. However, research has shown that these injections can increase the risk of leukaemia in an FA person's marrow. In fact, it can cause this. Because my marrow is pre-leukaemic we avoid this drug because it would cause me trouble and I don't want my marrow to go into full leukaemia. However, that means that I just plod on with neuts that are lowish. Now, in general life....for me this isn't a problem. I seem to have neuts and platelets that work heaps better than their level. I am still careful but I am in no way suffering majorly from infections and stuff. My problem was the immunoglobulins that I have the infusion for. However, with having a port that is not a part of you.....it is foreign to the body and allowing access to the blood....having low neuts is not really a good thing because low grade infections can start and stay in your body. You then need to be hospitalised for IV antibiotics and sometimes even have more ops to replace ports. I am not having a transplant so I am not in hospital correcting my marrow........I can understand why my haem was worried and I have been worried too. This port could cause more problems and strain on my marrow than it could be good for me. So what is my solution if my veins are so bad! I have to trust God and see what happens. I am not comfortable having a port with this type of risk! I don't want to be sick and I certainly don't want my marrow thrown around or upset from bad infections because of a port. So far, I am going really well and am very well! Does any of this make sense? It is so hard to explain on email or computer. There are other reasons as to why I don't want a port as well.....but with my haem so uncertain and me feeling uncertain, I believe that God put a stop to the operation so I could think more about this. I will see my haem in 2 weeks and have another big discussion with him. God has always provided me with solutions when I have been in a difficult spot!
However, my counts were fine for my gynae procedures under anaesthetic. I had a pap smear and a hysteroscopy. I get results in a week or two.
ok, it is 44 degrees C here today (111 degrees F). I have a doctor's appointment to get to. Please keep praying. FA is a constant battle with counts and all sorts! Thank you for your prayers and support. It is greatly appreciated as I do get very worried and stressed. However, I must stress that God is amazing and He continues to encourage me through every worry and burden and He works wonders with my health!
Love Charisse
I hope you like my new background. Yep, I know, I know....the words are a little harder to read with this background...but I love the background and want to keep it for a while. Also, I chose it so that your eye muscles get a good work out....hehe...haha.....hehe. Sorry.....
I had my counts repeated on Wed last week and to my relief my platelet count has come up to my average. I practically hugged my doctor when I was told and felt SO relieved. I can tell you having it drop so low was scary and I hope it doesn't do that again.
As for my neuts (ANC), they are still low but climbing up again. On Wed they had gone up from 200 to 350 and I am usually over 500. So really I fluctuate between 500 and 1500. Normal is about 2000. Labs can differ with that normal. It was good to see the count climbing again and I will be much relieved when it is up again. They are not high enough to have a port inserted yet though.
As for the port, I am not sure I am going to have that done now. My haematologist was not too keen on it since the idea was presented. A bit of history. The nurses at the cancer center constantly hassel me about a port. I have difficult veins and the last year have had very sore veins. They get upset and don't want to prick me but also feel bad if they have numerous goes which is understandable. However, I have not ever felt comfortable about a port.
I have lowish neutrophils (fight infection). Often I hear of people with FA or bone marrow failure having neuopgen injections to increase their neutrophils. However, research has shown that these injections can increase the risk of leukaemia in an FA person's marrow. In fact, it can cause this. Because my marrow is pre-leukaemic we avoid this drug because it would cause me trouble and I don't want my marrow to go into full leukaemia. However, that means that I just plod on with neuts that are lowish. Now, in general life....for me this isn't a problem. I seem to have neuts and platelets that work heaps better than their level. I am still careful but I am in no way suffering majorly from infections and stuff. My problem was the immunoglobulins that I have the infusion for. However, with having a port that is not a part of you.....it is foreign to the body and allowing access to the blood....having low neuts is not really a good thing because low grade infections can start and stay in your body. You then need to be hospitalised for IV antibiotics and sometimes even have more ops to replace ports. I am not having a transplant so I am not in hospital correcting my marrow........I can understand why my haem was worried and I have been worried too. This port could cause more problems and strain on my marrow than it could be good for me. So what is my solution if my veins are so bad! I have to trust God and see what happens. I am not comfortable having a port with this type of risk! I don't want to be sick and I certainly don't want my marrow thrown around or upset from bad infections because of a port. So far, I am going really well and am very well! Does any of this make sense? It is so hard to explain on email or computer. There are other reasons as to why I don't want a port as well.....but with my haem so uncertain and me feeling uncertain, I believe that God put a stop to the operation so I could think more about this. I will see my haem in 2 weeks and have another big discussion with him. God has always provided me with solutions when I have been in a difficult spot!
However, my counts were fine for my gynae procedures under anaesthetic. I had a pap smear and a hysteroscopy. I get results in a week or two.
ok, it is 44 degrees C here today (111 degrees F). I have a doctor's appointment to get to. Please keep praying. FA is a constant battle with counts and all sorts! Thank you for your prayers and support. It is greatly appreciated as I do get very worried and stressed. However, I must stress that God is amazing and He continues to encourage me through every worry and burden and He works wonders with my health!
Love Charisse
Wednesday, January 21, 2009
Surveillance, baby, blood counts, pictures
Hi All,
well I had bloods taken today to see how my neutrophils are going. I didn't ring for them this afternoon but will know in the morning as I have another procedure booked. I am having my usual surveillance of a hysteroscopy and a pap smear under a GA. It doesn't really matter too much if the neuts are lowish for these procedures but they needed to be checked anyway. I hope that the platelet count has recovered because they did a strange drop that has concerned me. I hate it how that happens. So far, whenever that has happened I have recovered but I get really concerned if a trend may happen. As I mentioned in my last post, I know that God is doing something in my life despite the physical manifestations of FA in my life. It sounds crazy but if I told you all the details about what God has been doing some of you would think it amazing and others would probably be not sure what to think. I press onwards in faith with what God has actually revealed to me and because of this I have hope. However, it still gets scary with this walk.
I am still very worried about my head where the cancer was removed. It is not acting normal so on the 30th I will be seeing the surgeon again to work out what is going on and that may need to be re-opened. May be they can do a biopsy first before re-opening to rule out any re-occurance of cancer. Oh dear. God has things under control but the way He works makes me feel confused sometimes. I must hold on to the clear promises He has made me because God does not give empty promises. I press onwards. However, I am human and clearly worried about things.
On a good note though, I am seeing the fruit of some promises that God made to me years ago and this is exciting because it proves that God is not full of empty promises and He keeps His Word. I am not going into detail but when the time comes I will tell you ALL ABOUT IT!!!
So please pray for my blood counts that have me really petrfied right now. I am holding onto God's promises!
Below is my beloved Isaac and myself! I think this is a cute picture which I took on my phone. We "adopted" a little boy from Africa through the Christian organisation, "Compassion". He is such a sweetie. Isaac thought that we adopted him for real, as in living at our house! He was so excited and talks all the time about being a big brother! Shame.....but we will be able to make a difference in this child's life. Isaac has already been writing letters to him and drawing pictures. I am yet to write my first letter and send some family photos and at the same time, send it in the post to our dear little 4 year old boy! God is good. It is great to be able to help other people.
A new addition! Don't I look like a natural???? As I was holding her my heart felt full of love!
Ha! She is not ours! I wish I was able to annouce the birth of another baby of ours! I long to! Ha! My good friend, Rachelle, had her baby 3 days ago. A little girl. She already has a little boy. She is so gorgeous and today Alan and I went to visit and enjoyed a great chat with the parents. I was able to hold her pretty much the WHOLE time we were there! I felt like I was looking down on Isaac for she is so small...Isaac was smaller but her smallness reminded me of Isaac. How I long to hold another one of my own in my arms. It is one of my dreams again!
Ha! Isn't Alan a natural? Look at him chillin with the baby in his arms and on his knee! Yep, we would look good with another addition to our family! Congratulations my dear friends! Thanks for letting us hold your beautiful baby while we were there!
This is a cute shot. Check out the dummy or pacifier as said in the States :-) Alan you are a natural! Haha!
Well I thoroughly enjoyed time with our friends at the hospital. Rachel is so easy going and that is a credit to her. Both her and her husband are dear friends and I always have a great laugh with Rachelle! She cheers me up SO much no matter what is going on in my life and she encourages me in my dreams! She walks with us in our faith walk as well and I just want to say thank you.....and thank you for letting me cuddle your baby as it meant SO much to me beyond belief!
well I had bloods taken today to see how my neutrophils are going. I didn't ring for them this afternoon but will know in the morning as I have another procedure booked. I am having my usual surveillance of a hysteroscopy and a pap smear under a GA. It doesn't really matter too much if the neuts are lowish for these procedures but they needed to be checked anyway. I hope that the platelet count has recovered because they did a strange drop that has concerned me. I hate it how that happens. So far, whenever that has happened I have recovered but I get really concerned if a trend may happen. As I mentioned in my last post, I know that God is doing something in my life despite the physical manifestations of FA in my life. It sounds crazy but if I told you all the details about what God has been doing some of you would think it amazing and others would probably be not sure what to think. I press onwards in faith with what God has actually revealed to me and because of this I have hope. However, it still gets scary with this walk.
I am still very worried about my head where the cancer was removed. It is not acting normal so on the 30th I will be seeing the surgeon again to work out what is going on and that may need to be re-opened. May be they can do a biopsy first before re-opening to rule out any re-occurance of cancer. Oh dear. God has things under control but the way He works makes me feel confused sometimes. I must hold on to the clear promises He has made me because God does not give empty promises. I press onwards. However, I am human and clearly worried about things.
On a good note though, I am seeing the fruit of some promises that God made to me years ago and this is exciting because it proves that God is not full of empty promises and He keeps His Word. I am not going into detail but when the time comes I will tell you ALL ABOUT IT!!!
So please pray for my blood counts that have me really petrfied right now. I am holding onto God's promises!
Below is my beloved Isaac and myself! I think this is a cute picture which I took on my phone. We "adopted" a little boy from Africa through the Christian organisation, "Compassion". He is such a sweetie. Isaac thought that we adopted him for real, as in living at our house! He was so excited and talks all the time about being a big brother! Shame.....but we will be able to make a difference in this child's life. Isaac has already been writing letters to him and drawing pictures. I am yet to write my first letter and send some family photos and at the same time, send it in the post to our dear little 4 year old boy! God is good. It is great to be able to help other people.
A new addition! Don't I look like a natural???? As I was holding her my heart felt full of love!
Ha! She is not ours! I wish I was able to annouce the birth of another baby of ours! I long to! Ha! My good friend, Rachelle, had her baby 3 days ago. A little girl. She already has a little boy. She is so gorgeous and today Alan and I went to visit and enjoyed a great chat with the parents. I was able to hold her pretty much the WHOLE time we were there! I felt like I was looking down on Isaac for she is so small...Isaac was smaller but her smallness reminded me of Isaac. How I long to hold another one of my own in my arms. It is one of my dreams again!
Ha! Isn't Alan a natural? Look at him chillin with the baby in his arms and on his knee! Yep, we would look good with another addition to our family! Congratulations my dear friends! Thanks for letting us hold your beautiful baby while we were there!
This is a cute shot. Check out the dummy or pacifier as said in the States :-) Alan you are a natural! Haha!
Well I thoroughly enjoyed time with our friends at the hospital. Rachel is so easy going and that is a credit to her. Both her and her husband are dear friends and I always have a great laugh with Rachelle! She cheers me up SO much no matter what is going on in my life and she encourages me in my dreams! She walks with us in our faith walk as well and I just want to say thank you.....and thank you for letting me cuddle your baby as it meant SO much to me beyond belief!
Well, I have to get up early tomorrow at 0630am. Rachelle is in the same hospital as me tomorrow. SO if she has not gone home after my procedure and I have woken up from my anaesthetic, I might pop in and see her :-) She said that would be fine.
My sister is due her baby in about a month and a bit. I will be an aunty again! So many people having babies. I know of 3 people who had babies this past week! Awwww.........tears in my eyes :-)
Thanks for the support and keep praying. We have some hurdles to get over while we achieve our dreams at the same time :-)
Love Charisse
Wednesday, September 5, 2007
Alan's birthday/ My appointment
Hello People,
well today I had an apppointment with my specialist. I had bloods but will need to get the results on Friday. It is a private practice and hospital and I had some hiccups along the way today and got my bloods done too late...hehe.
I woke up this morning with a sore mouth and throat and looked into my mouth and there are white yucky stuff....oh dear...oral fungal infection. Doctor confirmed this and so I am taking acidophilus and Nilstat...anti fungal (which I was already on). However, the antibiotics I had with IV and oral have been so strong and my system weak so it was bound to happen. The infection is gone. There is just a little bit of fluid still on the lung and I am SO exhausted still! I hate this lack of energy. Today it made me feel so sick that I threw up my breakfast! That was horrible. And then I said, "Happy Birthday Alan" sometime after the event. I felt so bad throwing up on his birthday.
Anyway, so I wanted to tell you all that it is Alan's birthday today...the 5th September and he is 30 years old! It has been heaps hard on the family with the sickness and I wanted Alan to feel special....SO I was wondering if some people could send him a birthday message to his email.
This is his email:
alan@fanconi.org.au
So please leave him a message if you have the time. You are great with leaving messages for me and I thank you for that.
I also want to honour my brother, Shannon, who had FA and died in 1994, October. It was his birthday on the 1st September and if he was alive...he would have been 27 years old. I miss him heaps.
Thanks for checking up on me guys. I will update with results when I get them.
Love Charisse
Happy Birthday Alan!!!!!
well today I had an apppointment with my specialist. I had bloods but will need to get the results on Friday. It is a private practice and hospital and I had some hiccups along the way today and got my bloods done too late...hehe.
I woke up this morning with a sore mouth and throat and looked into my mouth and there are white yucky stuff....oh dear...oral fungal infection. Doctor confirmed this and so I am taking acidophilus and Nilstat...anti fungal (which I was already on). However, the antibiotics I had with IV and oral have been so strong and my system weak so it was bound to happen. The infection is gone. There is just a little bit of fluid still on the lung and I am SO exhausted still! I hate this lack of energy. Today it made me feel so sick that I threw up my breakfast! That was horrible. And then I said, "Happy Birthday Alan" sometime after the event. I felt so bad throwing up on his birthday.
Anyway, so I wanted to tell you all that it is Alan's birthday today...the 5th September and he is 30 years old! It has been heaps hard on the family with the sickness and I wanted Alan to feel special....SO I was wondering if some people could send him a birthday message to his email.
This is his email:
alan@fanconi.org.au
So please leave him a message if you have the time. You are great with leaving messages for me and I thank you for that.
I also want to honour my brother, Shannon, who had FA and died in 1994, October. It was his birthday on the 1st September and if he was alive...he would have been 27 years old. I miss him heaps.
Thanks for checking up on me guys. I will update with results when I get them.
Love Charisse
Happy Birthday Alan!!!!!
Monday, September 3, 2007
Home a Couple of Days
Hello People,
I appreciate all who are showing support. I have been quite lonely and feeling quite upset. I can't wait until I am well again. I honestly have never felt this unwell before. I mean...may be when I was 17 and had kidney failure from an allergy to quinine and that made my counts drop to hardly anything.....BUT....since then, I don't remember ever being so unwell and so tired and exhausted. Having a shower makes me puffed and today I felt like I was going to throw up after getting out of bed. I ended up sleeping until 11am this morning...was exhausted from the shower and slept from 2pm til 5pm this afternoon. I am SO tired and feel awful all the time and I hate it. I felt teary and cried today because I would love to go out and visit friends but I feel sick in the car and I feel lonely. I honestly feel like no one understands how I feel...I know they probably do but I hate this. How many weeks am I going to be recovering. It is frustrating that this is something caused by sickness and not an elective surgery. I have to tell myself this is only the first week of recovery and that my house is bigger than my hospital room and I didn't have my son, Isaac, around while in hospital so I rested more and here I have him around and he is constantly active even though I am trying to do nothing. Alan is home with me but it is just more active being at home than hospital. I know it is important because it will make me stronger. I need the exercise...it is not even real exercise. I can't believe how pneumonia does this to you. I have only 3 more days left of the oral antibiotics. The infection should be gone. The fluid may take a little longer to go and the energy levels will take longer to come up. On Wednesday I have an appointment with my specialist at the hospital to do my counts and have a check up and all that. I hope my counts have come up higher. It scared me to have only 20 000 platelets. I have never been that low. Oh...except for when I had kidney failure when I was 17...they were knocked out from 150 000 to 11 000 and I had to have transufion. Now I am a proper adult and fully understand what is going on! My platelets had come up to 39 000 just when I left hospital so I hope they are higher again this week. It would be nice to see it recover. My Haemaglobin is usually at 14 (or 140) and dropped to 9.5 (95) while I was in hospital. I have never been there before either. My count came up to 9.8 (98) the day I left hospital so I really hope it is up a bit more this week but I know that haemaglobin can take forever to recover. What is weird is that my liver results that have always been high with enzymes were knocked down when I had pneumonia but the bilirubin was put up and I was jaundice. This is really weird that my counts went down towards normal. Guess what..the doctors do not understand but as I recover my liver counts are back up to where they usually are and the bilirubin coming down, reducing jaundice. It is like my normal counts for liver are just high and when I get sick they reduce to normal and when I am well they go back up where they have been for years and I feel more well. Doctors are amazed how strange that it.
Anyway, I really should go. My back is sore from the computer. Oh Isaac was back at preschool today which was good for him. He only goes until 1130am but it was good for him to be around children again even though he felt upset about it this morning. Alan stayed with him for a while to make sure he fitted in again and we made sure he knew mummy would be home when he got home. That made all the difference.
I will update soon again.
Love Charisse
I appreciate all who are showing support. I have been quite lonely and feeling quite upset. I can't wait until I am well again. I honestly have never felt this unwell before. I mean...may be when I was 17 and had kidney failure from an allergy to quinine and that made my counts drop to hardly anything.....BUT....since then, I don't remember ever being so unwell and so tired and exhausted. Having a shower makes me puffed and today I felt like I was going to throw up after getting out of bed. I ended up sleeping until 11am this morning...was exhausted from the shower and slept from 2pm til 5pm this afternoon. I am SO tired and feel awful all the time and I hate it. I felt teary and cried today because I would love to go out and visit friends but I feel sick in the car and I feel lonely. I honestly feel like no one understands how I feel...I know they probably do but I hate this. How many weeks am I going to be recovering. It is frustrating that this is something caused by sickness and not an elective surgery. I have to tell myself this is only the first week of recovery and that my house is bigger than my hospital room and I didn't have my son, Isaac, around while in hospital so I rested more and here I have him around and he is constantly active even though I am trying to do nothing. Alan is home with me but it is just more active being at home than hospital. I know it is important because it will make me stronger. I need the exercise...it is not even real exercise. I can't believe how pneumonia does this to you. I have only 3 more days left of the oral antibiotics. The infection should be gone. The fluid may take a little longer to go and the energy levels will take longer to come up. On Wednesday I have an appointment with my specialist at the hospital to do my counts and have a check up and all that. I hope my counts have come up higher. It scared me to have only 20 000 platelets. I have never been that low. Oh...except for when I had kidney failure when I was 17...they were knocked out from 150 000 to 11 000 and I had to have transufion. Now I am a proper adult and fully understand what is going on! My platelets had come up to 39 000 just when I left hospital so I hope they are higher again this week. It would be nice to see it recover. My Haemaglobin is usually at 14 (or 140) and dropped to 9.5 (95) while I was in hospital. I have never been there before either. My count came up to 9.8 (98) the day I left hospital so I really hope it is up a bit more this week but I know that haemaglobin can take forever to recover. What is weird is that my liver results that have always been high with enzymes were knocked down when I had pneumonia but the bilirubin was put up and I was jaundice. This is really weird that my counts went down towards normal. Guess what..the doctors do not understand but as I recover my liver counts are back up to where they usually are and the bilirubin coming down, reducing jaundice. It is like my normal counts for liver are just high and when I get sick they reduce to normal and when I am well they go back up where they have been for years and I feel more well. Doctors are amazed how strange that it.
Anyway, I really should go. My back is sore from the computer. Oh Isaac was back at preschool today which was good for him. He only goes until 1130am but it was good for him to be around children again even though he felt upset about it this morning. Alan stayed with him for a while to make sure he fitted in again and we made sure he knew mummy would be home when he got home. That made all the difference.
I will update soon again.
Love Charisse
Friday, August 31, 2007
Home Today
Hello People,
I just got home from hospital today and am exhausted already. Yesterday they started me on strong oral antibiotics while I finished the IV course and it was so strong...I had a bad day of throwing up and feeling awful...so they changed my oral again to another strong one which I think makes me feel a little lousey but not as bad.
I still have some fluid on my left lung, but the infection is clearing up. I have not had a temperature for at least 3 days. I have felt a little better and my appetite is slowly..very slowly coming back...I have been seeing the dietition and have some nutritious things that I took home to help me get back on top of things. I am on the same pain protocol that I was at hospital and we take my temperature regularly...if anything changes we have to go back in pronto...we cannot have me being sick like I was last week when I nearly died...it was serious.
Isaac is really excited to have me home. We have to remind him that I need to have rests but he is excited and fell asleep very early in his own bed for the first time in 2 weeks....knowing that mummy is safe at home and that the next week Alan will have off to take care of us. We are looking into other home help to help me recover as well.
I have to take 12 weeks off of work. I still have that surgery coming up and need to get better for that....I know it will be a long recovery. I was very upset that my counts were knocked out. I never had bad haemagobin but that was knocked out too so I am anaemic and tired. The Goji Juice I take does help though.
I wanted to thank you all for praying for me and leaving messages of support..it has been greatly needed for Alan as well as myself. Please keep praying...this journey of recovery is long and pneumonia is not good for an FA patient...please keep offering your support. I realised how many people care for our family and I am blessed.
Well I am tired and am going to rest. Thank you all....please keep checking for updates. I will be having weekly follow ups with my doctor and blood tests to check my marrow is recovering and if I need help with transfusions. Thanks ....I will fight on.
I love you all.
Charisse
I just got home from hospital today and am exhausted already. Yesterday they started me on strong oral antibiotics while I finished the IV course and it was so strong...I had a bad day of throwing up and feeling awful...so they changed my oral again to another strong one which I think makes me feel a little lousey but not as bad.
I still have some fluid on my left lung, but the infection is clearing up. I have not had a temperature for at least 3 days. I have felt a little better and my appetite is slowly..very slowly coming back...I have been seeing the dietition and have some nutritious things that I took home to help me get back on top of things. I am on the same pain protocol that I was at hospital and we take my temperature regularly...if anything changes we have to go back in pronto...we cannot have me being sick like I was last week when I nearly died...it was serious.
Isaac is really excited to have me home. We have to remind him that I need to have rests but he is excited and fell asleep very early in his own bed for the first time in 2 weeks....knowing that mummy is safe at home and that the next week Alan will have off to take care of us. We are looking into other home help to help me recover as well.
I have to take 12 weeks off of work. I still have that surgery coming up and need to get better for that....I know it will be a long recovery. I was very upset that my counts were knocked out. I never had bad haemagobin but that was knocked out too so I am anaemic and tired. The Goji Juice I take does help though.
I wanted to thank you all for praying for me and leaving messages of support..it has been greatly needed for Alan as well as myself. Please keep praying...this journey of recovery is long and pneumonia is not good for an FA patient...please keep offering your support. I realised how many people care for our family and I am blessed.
Well I am tired and am going to rest. Thank you all....please keep checking for updates. I will be having weekly follow ups with my doctor and blood tests to check my marrow is recovering and if I need help with transfusions. Thanks ....I will fight on.
I love you all.
Charisse
Tuesday, August 28, 2007
Update From Hospital again
Hi Guys,
I am still in hospital and have felt very emotional when Isaac comes to visit me. He perks up when he sees me and gets excited saying "mummy you are better" and I have to explain that I am almlost better but that I have an infection here in the chest that is not better yet; and mummmy can not come home yet. He gets a big bottom lip and tears swell up and I feel so bad. He has been having some other things that show his worry and anxiety over his mummma.
So today I had a liver / abdominal ultrasound. All came back good but the ultrasound showed still fluid on my lung and so ther antibiotic (IV) must continue to at least Friday and then all will be re-evaluated and then I may be able to go home with a PICC-line in or have just oral antibiotics with weekly follow ups and blood tests....counts have been knocked really low and feel scared about it...right now bloods are taken daily or every second day. I was told today to expect my recovery of my counts and pneumonia to be between 6-12 weeks and that it will be a while...we had to cancel our holdiay...i am heaps disappointed.
It was nice to have mum here today and Darren and Angela visit tonight and Liesl my sister take care of Isaac today. Thanks to our friends and families, and nanny/close friend. Who have been supporting us so much. Densie (nanna)... I think about you a lot and are hoping you are really having a fun time overseas..Love you.
I know that there is a purpose for everything, and God will work all things out for good some how... so keep trusting in Him... I will write more when I am less tired.
Love charisse.
I am still in hospital and have felt very emotional when Isaac comes to visit me. He perks up when he sees me and gets excited saying "mummy you are better" and I have to explain that I am almlost better but that I have an infection here in the chest that is not better yet; and mummmy can not come home yet. He gets a big bottom lip and tears swell up and I feel so bad. He has been having some other things that show his worry and anxiety over his mummma.
So today I had a liver / abdominal ultrasound. All came back good but the ultrasound showed still fluid on my lung and so ther antibiotic (IV) must continue to at least Friday and then all will be re-evaluated and then I may be able to go home with a PICC-line in or have just oral antibiotics with weekly follow ups and blood tests....counts have been knocked really low and feel scared about it...right now bloods are taken daily or every second day. I was told today to expect my recovery of my counts and pneumonia to be between 6-12 weeks and that it will be a while...we had to cancel our holdiay...i am heaps disappointed.
It was nice to have mum here today and Darren and Angela visit tonight and Liesl my sister take care of Isaac today. Thanks to our friends and families, and nanny/close friend. Who have been supporting us so much. Densie (nanna)... I think about you a lot and are hoping you are really having a fun time overseas..Love you.
I know that there is a purpose for everything, and God will work all things out for good some how... so keep trusting in Him... I will write more when I am less tired.
Love charisse.
Monday, August 27, 2007
Still In hospital...plodding long
Hello All, Sorry for the late update.
I was supposed to come home on Saturday but the pneumonia flared up. I changed from IV antibiotics to oral at the end of last week, but started to get worse again over the weekend, so they now have me back on a new course of IV antibiotics.
Unfortunately, this means my holiday is cancelled this week, and means i'll be in hospital for the rest of this week with the option to have home-nursing with a PICC line rather than stay in hospital the whole time.
I'm still a little jaundice (yellow eyes), and ankles are swallen (maybe due to my liver being affected, plus all the fluids i've been given). I'm having a liver ultrasound tomorrow, and have given a urin sample to check the status of my kidneys.
i have not enjoyed my week--there's been things which have made me anxious, and i miss Isaac so much.
Thanks to my mum, dad, liesl, tim, darren & angela who have looked after isaac and taken care of our cats while we've been in hospital.
I still feel very lethargic and my energy levels are quite low. My counts (CBC, LFT) have all been disturbed by the pneumonia--the CBC knocked out, and will take a little time to recover.
Until next time... i'll update again soon. (with alan transcribing)
Love charisse.
xx
I was supposed to come home on Saturday but the pneumonia flared up. I changed from IV antibiotics to oral at the end of last week, but started to get worse again over the weekend, so they now have me back on a new course of IV antibiotics.
Unfortunately, this means my holiday is cancelled this week, and means i'll be in hospital for the rest of this week with the option to have home-nursing with a PICC line rather than stay in hospital the whole time.
I'm still a little jaundice (yellow eyes), and ankles are swallen (maybe due to my liver being affected, plus all the fluids i've been given). I'm having a liver ultrasound tomorrow, and have given a urin sample to check the status of my kidneys.
i have not enjoyed my week--there's been things which have made me anxious, and i miss Isaac so much.
Thanks to my mum, dad, liesl, tim, darren & angela who have looked after isaac and taken care of our cats while we've been in hospital.
I still feel very lethargic and my energy levels are quite low. My counts (CBC, LFT) have all been disturbed by the pneumonia--the CBC knocked out, and will take a little time to recover.
Until next time... i'll update again soon. (with alan transcribing)
Love charisse.
xx
Wednesday, August 22, 2007
Update From Hospital
Hello all,
It is Charisse here again.
I have moved back from H.D.U (High-dependancy Unit) to the regular haemocology/oncology ward of which I am relieved.
I have felt very scared and traumatised by what has happened and have been crying lots. The pneumonia is heaps clearer and I am up, walking about, eating a little, and drinking more.
I have been doing physio exercises and going well. I also may be having some counselling due to trauma I've experienced while here, and other associated with my brother's death.
My feet are also quite swollen which is due to a lack of protein in my blood due to the infection and not eating as well. I have had an ultrasound on my legs to ensure there is no DVT (deep vein thrombosis). I have been visited by a dietician who is giving me special drinks and an exclusive menu to choose from for meals to help in this area.
I'm not entirely certin when I am going home, but expect sometime by the end of the week.
Thank you to all who have helped out, and those who have been praying.
Love Charisse
xx
It is Charisse here again.
I have moved back from H.D.U (High-dependancy Unit) to the regular haemocology/oncology ward of which I am relieved.
I have felt very scared and traumatised by what has happened and have been crying lots. The pneumonia is heaps clearer and I am up, walking about, eating a little, and drinking more.
I have been doing physio exercises and going well. I also may be having some counselling due to trauma I've experienced while here, and other associated with my brother's death.
My feet are also quite swollen which is due to a lack of protein in my blood due to the infection and not eating as well. I have had an ultrasound on my legs to ensure there is no DVT (deep vein thrombosis). I have been visited by a dietician who is giving me special drinks and an exclusive menu to choose from for meals to help in this area.
I'm not entirely certin when I am going home, but expect sometime by the end of the week.
Thank you to all who have helped out, and those who have been praying.
Love Charisse
xx
Tuesday, August 21, 2007
still in hospital
Hi everybody,
Charisse went in hospital for her ear infection, and has been treated there since Sunday night. During the course of her stay, she started to get quite severe muscle pains around her ribs and back which were aggrivated by an on-going cough from previous weeks sickness.
Throughout Monday night and Tuesday Charisse has been on heavy pain-killers and sedatives to combat the muscle pain and give her some peace. However, during this time another infection started brewing (if not, was always there) and continued to worsen. Last night the doctor came in and checked her over, and diagnosed that she has developed pneumonia in the base of one of her lungs.
She has been catagorised as moderate-severe, primaryly due to the blood complications with Fanconi Anaemia.
She is resting well, and showing signs of improvement, but remains in the high-dependancy unit at the hospital.
She is doing well, showing signs of recovery. Please pray that this continues, and all her other blood-related issues also resolve.
Regards,
Alan (Charisse's husband)
Charisse went in hospital for her ear infection, and has been treated there since Sunday night. During the course of her stay, she started to get quite severe muscle pains around her ribs and back which were aggrivated by an on-going cough from previous weeks sickness.
Throughout Monday night and Tuesday Charisse has been on heavy pain-killers and sedatives to combat the muscle pain and give her some peace. However, during this time another infection started brewing (if not, was always there) and continued to worsen. Last night the doctor came in and checked her over, and diagnosed that she has developed pneumonia in the base of one of her lungs.
She has been catagorised as moderate-severe, primaryly due to the blood complications with Fanconi Anaemia.
She is resting well, and showing signs of improvement, but remains in the high-dependancy unit at the hospital.
She is doing well, showing signs of recovery. Please pray that this continues, and all her other blood-related issues also resolve.
Regards,
Alan (Charisse's husband)
Saturday, August 18, 2007
hospital
Hi All,
have been very sick with the ear infection. Temps too high last night. Specialist wants me to come in for a couple of days of IV antibiotics...going in today.
Just wanted to let you know.
Love Charisse
have been very sick with the ear infection. Temps too high last night. Specialist wants me to come in for a couple of days of IV antibiotics...going in today.
Just wanted to let you know.
Love Charisse
Friday, August 17, 2007
Ear Infection
Hi Guys,
well the sick saga still continues. Alan is feeling much better but is still lethargic. Isaac is heaps better and seems to have his energy back but his horrible cough remains. In regards to the flu bug I feel much better but still lethargic....then yesterday morning I woke at 0530am with the worst ear ache (left ear) and stiff neck. I could not fall back asleep because of the pain. Went to infusion. Infusion went really well with the new product again and so far I have only had tremors. However, my specialist looked in my ear and he said it was all swollen and red and a nasty infection and all my lymph nodes are up from the ear to under my arm. My face is swollen on that side today and I am really sore. They gave me a big dose of IV fluclox while having infusion and I have an oral antibiotic to continue at home but I have to call if it shows no sign of improving after 48 hours. My neuts have been reasonable at 1000 but my body has taken such a knocking from all the continuous bugs that it is having trouble getting on top of things so they don't want me to be left to sort it out on my own. I have steroid drops for my ear too. I feel miserable.
I was so worried about being recovered for my surgery and prayed Thursday night that God would help it all work out and then Friday morning my gynae rang and said we had to put the surgery off for 3 weeks...all the anaethetists are not going to be there! What a relief. This gives me an extra 3 weeks to recover...and Isaac is too unwell with coughing stuff up to have his surgery this coming Friday. The only other date they offered me that was close was 2 days after my surgery and I couldn't be with him. I think it is not right that I am not with him. So now my surgery is put off an extra 3 weeks, Isaac's can be made for the 21st Sept and I can be with him. He can have extra time to recover from his fluey bug. So this is actually good and working out for us. Praise the Lord.
I am going to go now. Surely this sickness should all be over soon. I am so scared Isaac will get extra sick by sending him back to kindy. He has not had the flu shot this year. Doctors don't often reccomend it for the young ones here....say it is more important for adults and immunosuppressed and elderly. However the flu in Australia has been killing people....it always kills some people. However, it is particularly nasty. I had my flu shot ages ago. However, spoke to Isaac's doctor and he was concerned at how sick Isaac has been and so this week we are getting his flu shot. The flu season is expected to go into October and may be November...summer time this year and so it is not too late and that will protect him more at kindy.....and me. This new regime for kids has been recommended from now on with every year. I actually usually get Isaac immunised but I was slack with it this year. All the preschoolers are getting hit with it. No wonder Isaac can't seem to escape it. I feel bad. I should have done it when I had it. The doctor says it is still worth it.
Ok, gonna go...very sore. Please keep praying for us. We are supposed to be holidaying in the snow in a couple of weeks! This is all so crazy!
Love Charisse
well the sick saga still continues. Alan is feeling much better but is still lethargic. Isaac is heaps better and seems to have his energy back but his horrible cough remains. In regards to the flu bug I feel much better but still lethargic....then yesterday morning I woke at 0530am with the worst ear ache (left ear) and stiff neck. I could not fall back asleep because of the pain. Went to infusion. Infusion went really well with the new product again and so far I have only had tremors. However, my specialist looked in my ear and he said it was all swollen and red and a nasty infection and all my lymph nodes are up from the ear to under my arm. My face is swollen on that side today and I am really sore. They gave me a big dose of IV fluclox while having infusion and I have an oral antibiotic to continue at home but I have to call if it shows no sign of improving after 48 hours. My neuts have been reasonable at 1000 but my body has taken such a knocking from all the continuous bugs that it is having trouble getting on top of things so they don't want me to be left to sort it out on my own. I have steroid drops for my ear too. I feel miserable.
I was so worried about being recovered for my surgery and prayed Thursday night that God would help it all work out and then Friday morning my gynae rang and said we had to put the surgery off for 3 weeks...all the anaethetists are not going to be there! What a relief. This gives me an extra 3 weeks to recover...and Isaac is too unwell with coughing stuff up to have his surgery this coming Friday. The only other date they offered me that was close was 2 days after my surgery and I couldn't be with him. I think it is not right that I am not with him. So now my surgery is put off an extra 3 weeks, Isaac's can be made for the 21st Sept and I can be with him. He can have extra time to recover from his fluey bug. So this is actually good and working out for us. Praise the Lord.
I am going to go now. Surely this sickness should all be over soon. I am so scared Isaac will get extra sick by sending him back to kindy. He has not had the flu shot this year. Doctors don't often reccomend it for the young ones here....say it is more important for adults and immunosuppressed and elderly. However the flu in Australia has been killing people....it always kills some people. However, it is particularly nasty. I had my flu shot ages ago. However, spoke to Isaac's doctor and he was concerned at how sick Isaac has been and so this week we are getting his flu shot. The flu season is expected to go into October and may be November...summer time this year and so it is not too late and that will protect him more at kindy.....and me. This new regime for kids has been recommended from now on with every year. I actually usually get Isaac immunised but I was slack with it this year. All the preschoolers are getting hit with it. No wonder Isaac can't seem to escape it. I feel bad. I should have done it when I had it. The doctor says it is still worth it.
Ok, gonna go...very sore. Please keep praying for us. We are supposed to be holidaying in the snow in a couple of weeks! This is all so crazy!
Love Charisse
Tuesday, August 14, 2007
Still Sick!
Hello All,
update on our family. Please keep praying..we need the prayer.
Well, I mentioned that Isaac was a bit brighter on that Sunday but I came down with the bug....we sent Isaac to preschool on Monday and he came home and crashed! He slept for 3 hours and then he went to bed early at night and he started with the horrible cough again and was washed out and began temperatures again that night. So he has been home, yet again, and still looks washed out. He will be home all week. It is such a horrible bug. I have been really sick with it and went to the GP on Tuesday and am on antibiotics. Felt so overwhelmed by it all that I burst out in tears at the doctors....because by then Alan also came down with it and has had fevers, amazing lethargy, coughs, aches and pains and so on. So mum came on Tuesday and looked after us all and Alan was in bed all day. Alan went to the doctor today and has been put on antibiotics...so Isaac, Alan and I are all on antibiotics and I am still in my Pj's and it is 1.30pm. We are all lazing at home because we are all sick. Isaac still has surgery next Friday. My infusion on Friday...I just pray Isaac is well by the weekend. This has knocked our family unit around and we all have felt like crying...hehe....I suppose that sounds funny...but we have not found it amusing.
So please keep praying for us.
Got to go...I should go have a bath or shower.
Love Charisse
update on our family. Please keep praying..we need the prayer.
Well, I mentioned that Isaac was a bit brighter on that Sunday but I came down with the bug....we sent Isaac to preschool on Monday and he came home and crashed! He slept for 3 hours and then he went to bed early at night and he started with the horrible cough again and was washed out and began temperatures again that night. So he has been home, yet again, and still looks washed out. He will be home all week. It is such a horrible bug. I have been really sick with it and went to the GP on Tuesday and am on antibiotics. Felt so overwhelmed by it all that I burst out in tears at the doctors....because by then Alan also came down with it and has had fevers, amazing lethargy, coughs, aches and pains and so on. So mum came on Tuesday and looked after us all and Alan was in bed all day. Alan went to the doctor today and has been put on antibiotics...so Isaac, Alan and I are all on antibiotics and I am still in my Pj's and it is 1.30pm. We are all lazing at home because we are all sick. Isaac still has surgery next Friday. My infusion on Friday...I just pray Isaac is well by the weekend. This has knocked our family unit around and we all have felt like crying...hehe....I suppose that sounds funny...but we have not found it amusing.
So please keep praying for us.
Got to go...I should go have a bath or shower.
Love Charisse
Sunday, August 5, 2007
Interesting....
Hello All,
to give you all an update. The new IVIG product didn't give me many problems this time! YES! I didn't have headaches or flu symptoms or the pain I get with it. I had slight fatigue and tremors but I felt heaps better and didn't spend my week in tears like I have the last number of infusions. I really pray that all the infusions will be like this from now on. What a relief.
I am feeling much better. I still have a cough but it is going. The infection is gone I think. Bloods were improved this past time as well which I am really pleased about. Nuets were 1500! I am pleased with that.
I think I will still have that MRI but because I have an anaesthetic, I needed to wait until I am more well from the cough.
News! I am having surgery in about 6 weeks. It is a private issue for me but I thought I better let you know I am having the surgery. It is a gynae surgery but I wanted to let you know not to worry...no cancer or anything like that. It is a big surgery and I will take some time to recover. So please keep me in prayer. They will be cutting me. I will be in hospital for a week at the least and more if I need it. The date is 19th Sept. All steam ahead unless for some reason it gets cancelled. I will have a boost of platelets because the surgery requires really high platelets and mine are not in that range...as you know they dropped a bit since the blast count went up a little...but all is stable. My counts are very stable right now. Just don't have high enough for this surgery and they will be cutting me and I wanted to be safe. This would be the first time I have had platelets all my life....well I had them when I had a reaction to quinine when I was 17 years old...it wiped my count out from 150 000 to 2000...but since then I have never had one...not even when Isaac was born...my count boareded on 120 000 when I had Isaac. I am often private with my counts but my platelets are not that high anymore either but not low enough for needing platelets...except with huge procedures. So I am actually nervous about it. Isn't that strange...something I don't have to do and so I get scared about it...hmmm...so many kids and different people have to have it and I bet those kids are less scared than me.
Ok, so now to update on Isaac. He is well and back at kindy. We were supposed to meet with the paediatric dentist last Wed and we got the place mixed up and had to re-sechedule for this Wed. His tooth that was going black has lightened up again and is close to the normal colour of the other tooth! Praise the Lord! God answered my prayers with a little thing like this!
I am trying to work this week. Need to ring my hospital and put my name down for a nursing shift. I will be having a couple of months off work after the surgery and need to make myself known before then...get a doctor's note from my GP about it and probably should do all my drug calculations, manual handling and CPR certificates with the hospital before my surgery. Then when I am ready I can just go back and practice without having to do all this after.
Alan is good. Working as per usual. And he has Mon and Wed with me at home but I am sure that some of those days are mostly spent doing his private company. There are days that we choose to have only for us and go on an outing though. He is trying to set up his new company properly.
Well, I am gonna go. I am waiting to hear from 2 friends when they go into labour. Hehe...I may go visit one of them this afternoon while Alan is working....may be Isaac is settled asleep...I don't know...we will see.
Oh I am still knitting. It is very relaxing and I am a lot faster now. I am working on my 3rd square. I would be further along but the infusion trouble made it hard to knit with all that pain the last couple of months...I am doing more now though.
All of those families going to camp...I hope you all have a wonderful time! I will hopefully get to go another time!
Love you All,
Charisse
to give you all an update. The new IVIG product didn't give me many problems this time! YES! I didn't have headaches or flu symptoms or the pain I get with it. I had slight fatigue and tremors but I felt heaps better and didn't spend my week in tears like I have the last number of infusions. I really pray that all the infusions will be like this from now on. What a relief.
I am feeling much better. I still have a cough but it is going. The infection is gone I think. Bloods were improved this past time as well which I am really pleased about. Nuets were 1500! I am pleased with that.
I think I will still have that MRI but because I have an anaesthetic, I needed to wait until I am more well from the cough.
News! I am having surgery in about 6 weeks. It is a private issue for me but I thought I better let you know I am having the surgery. It is a gynae surgery but I wanted to let you know not to worry...no cancer or anything like that. It is a big surgery and I will take some time to recover. So please keep me in prayer. They will be cutting me. I will be in hospital for a week at the least and more if I need it. The date is 19th Sept. All steam ahead unless for some reason it gets cancelled. I will have a boost of platelets because the surgery requires really high platelets and mine are not in that range...as you know they dropped a bit since the blast count went up a little...but all is stable. My counts are very stable right now. Just don't have high enough for this surgery and they will be cutting me and I wanted to be safe. This would be the first time I have had platelets all my life....well I had them when I had a reaction to quinine when I was 17 years old...it wiped my count out from 150 000 to 2000...but since then I have never had one...not even when Isaac was born...my count boareded on 120 000 when I had Isaac. I am often private with my counts but my platelets are not that high anymore either but not low enough for needing platelets...except with huge procedures. So I am actually nervous about it. Isn't that strange...something I don't have to do and so I get scared about it...hmmm...so many kids and different people have to have it and I bet those kids are less scared than me.
Ok, so now to update on Isaac. He is well and back at kindy. We were supposed to meet with the paediatric dentist last Wed and we got the place mixed up and had to re-sechedule for this Wed. His tooth that was going black has lightened up again and is close to the normal colour of the other tooth! Praise the Lord! God answered my prayers with a little thing like this!
I am trying to work this week. Need to ring my hospital and put my name down for a nursing shift. I will be having a couple of months off work after the surgery and need to make myself known before then...get a doctor's note from my GP about it and probably should do all my drug calculations, manual handling and CPR certificates with the hospital before my surgery. Then when I am ready I can just go back and practice without having to do all this after.
Alan is good. Working as per usual. And he has Mon and Wed with me at home but I am sure that some of those days are mostly spent doing his private company. There are days that we choose to have only for us and go on an outing though. He is trying to set up his new company properly.
Well, I am gonna go. I am waiting to hear from 2 friends when they go into labour. Hehe...I may go visit one of them this afternoon while Alan is working....may be Isaac is settled asleep...I don't know...we will see.
Oh I am still knitting. It is very relaxing and I am a lot faster now. I am working on my 3rd square. I would be further along but the infusion trouble made it hard to knit with all that pain the last couple of months...I am doing more now though.
All of those families going to camp...I hope you all have a wonderful time! I will hopefully get to go another time!
Love you All,
Charisse
Friday, July 27, 2007
health update
Hi All,
well my cold ended up becoming a chest infection with many hot sweats, fainting spells and everything else. I started on antibiotics last night after seeing my GP....and then went to the center for my IVIG infusion today and the specialist wanted to give me some IV antibiotics...so I had that as well. They changed my infusion from Intagam P to Oxagam...different product...so let's pray that this change reduces those reactions I have been having. I feel good tonight so far....but we have a week to see if I still have a reaction this time.
Isaac is feeling better. He still has a bit of a barking cough but that will dissapate throughout the next 5 days I am told...unless he starts up with fevers and so on...he should be ok. He started back at kindy yesterday. The last day of the kindy week but he enjoyed it and is back to normal energy levels again.
Wednesday was my sickest day. I was supposed to attend a funeral of a friend with Alan and I ended up not being able to dry or dress myself after the shower/bath and was nauseated and all after my night on Tuesday of coughing constantly until about 1.30am in the morning. So a friend who was babsitting Isaac for me on Wed while Alan and I went to the funeral also had me at her house in one of their beds. I told Alan to go to the funeral because it was important. My friend looked after Isaac while I was sick and I slept in the bed for the majority of the time I was there. It was so nice that she helped us out...such a strange thing to ask a friend to watch both the mother and the child....hehe....Isaac loves playing with her child as well! They are really good friends at kindy and live very close to us.
Today at infusion they got the IV in first time...YAY!!!! I always feel very anxious about that and the infusion ran smoothly with hardly any beeps. I felt a bit flushed at times but otherwise it was ok.
Now I am at home just waiting for Alan and Isaac to get home. There are no kindy sessions on Friday so while I am at the hospital and Alan is at work...Isaac goes to mum's house and spends the day with them. Alan's mum and I have "our day" at the hospital...we have scones and stuff...it has become a tradition.
Well I am gonna sign off. Thanks to all of those who have been praying for me and supporting me and I will update again soon.
Love Charisse
well my cold ended up becoming a chest infection with many hot sweats, fainting spells and everything else. I started on antibiotics last night after seeing my GP....and then went to the center for my IVIG infusion today and the specialist wanted to give me some IV antibiotics...so I had that as well. They changed my infusion from Intagam P to Oxagam...different product...so let's pray that this change reduces those reactions I have been having. I feel good tonight so far....but we have a week to see if I still have a reaction this time.
Isaac is feeling better. He still has a bit of a barking cough but that will dissapate throughout the next 5 days I am told...unless he starts up with fevers and so on...he should be ok. He started back at kindy yesterday. The last day of the kindy week but he enjoyed it and is back to normal energy levels again.
Wednesday was my sickest day. I was supposed to attend a funeral of a friend with Alan and I ended up not being able to dry or dress myself after the shower/bath and was nauseated and all after my night on Tuesday of coughing constantly until about 1.30am in the morning. So a friend who was babsitting Isaac for me on Wed while Alan and I went to the funeral also had me at her house in one of their beds. I told Alan to go to the funeral because it was important. My friend looked after Isaac while I was sick and I slept in the bed for the majority of the time I was there. It was so nice that she helped us out...such a strange thing to ask a friend to watch both the mother and the child....hehe....Isaac loves playing with her child as well! They are really good friends at kindy and live very close to us.
Today at infusion they got the IV in first time...YAY!!!! I always feel very anxious about that and the infusion ran smoothly with hardly any beeps. I felt a bit flushed at times but otherwise it was ok.
Now I am at home just waiting for Alan and Isaac to get home. There are no kindy sessions on Friday so while I am at the hospital and Alan is at work...Isaac goes to mum's house and spends the day with them. Alan's mum and I have "our day" at the hospital...we have scones and stuff...it has become a tradition.
Well I am gonna sign off. Thanks to all of those who have been praying for me and supporting me and I will update again soon.
Love Charisse
Tuesday, July 17, 2007
Discouraged
Hello Guys,
well I still have the headaches....not nearly as bad as needing to go in hospital, but they are still there. I am feeling a little worried. The headaches could be increased by stress as well as the IVIG's. I have not had my eyes tested for a while..but don't seem to have trouble with my eyes..but I suppose you could just get headaches. We still have not had the MRI but will push for that to be soon. I was trying to just relax a bit since the drama. My IVIG is in a week and a half and I feel stressed about having another one because of the extreme reactions. OH dear.....waiting for the doctor to ring back about details to do with the IVIG and a new product. I also have some ulcers in my mouth which usually add to a headache...they are on the side of my tongue where it really hurts and my ear seems to hurt from it. So I have something to numb it which does help. I have not had them for ages, literally and think it must be the stress from the headaches and stuff. I am really tense in my muscles and think that may be regular, gentle massages would help. So Alan and I talked about finding out about all that. It may help me be more relaxed and sleep better and have less headaches....we both know the MRI is still a priority...just trying to help other areas as well to get rid of headaches.
Then a week a go I noticed that Isaac's front tooth was discoloured and was really discouraged. I know that a couple of weeks a go at church he had a head on collision with another child and had blood in his mouth. However, Alan and I couldn't see anything wrong with his front teeth.....must have bumped it then...surely. It is quite discoloured now and I am sure the nerve has died. I rang the dentist and have him in for an appointment tomorrow at 4.45pm. They will do an x-ray and will be able to see the nerve and what it is doing. He has a beautiful smile and when he smiles he shows his gums and his teeth and I am so sad about his tooth. Hopefully we can do something about it so it doesn't look awful. They may be able to whiten it and then he will not feel weird about it. He has been good....it doesn't hurt or feel strange...he tells me...we have been practising how we will do at the dentist. This will be his first proper visit and i am a little anxious. People have told me that his tooth is not too noticeable but it can be seen. I know some people will read this and think, "it will be ok"...and I know it is a baby tooth and will fall out and be replaced one day but as a mum, anything that happens to teeth...baby teeth or not...it can be very upsetting. I went to see a friend on Monday and her child and Isaac play together and she said when her child chipped his tooth she was crying like I have been and she understands the "mummy blues". That helped. She and I are very similar with our feelings and I appreciate her supporting me. So I am trying to not get too upset and see what the dentist says as well...Isaac has a good mouth of teeth...very healthy...so that is good.
On Monday night Isaac woke at 11pm with croup. That is always scary and we sat in the bathroom with the steam which didn't seem to work as well as it usually does. Isaac's G.P gave us some baby prednisolone last winter to use for croup when the steam doesn't work....so we don't have to go out in the freezing cold to the hospital...Isaac communicates now and tells me how he feels and he was a bit panicked. He asked us to call our doctor friends...which was good because we know they are up late (not calling just because Isaac asked) and I didn't know the new dose of prednisolone for Isaac's new wait...so we rang and they said we were doing everything right....told us the new dose and we gave Isaac the medicine. If he still had trouble with breathing an hour or two later we would go to the hospital...I would call the ambulance so he didn't have to be in the wintery, freezing cold. I think that is better for croup. But we didn't have to. The medicine worked as well as the humidifier and Alan slept in the room with him to make sure he was ok...we got to sleep late but it all worked out. Isaac is a lot better today.
So, we have a visitor coming tonight and I am going to go relax. Please pray we get the headaches sorted out. Although, my week doesn't sound like it has been too relaxing and that probably doesn't help.
I hope you are all doing ok!
Love Charisse
well I still have the headaches....not nearly as bad as needing to go in hospital, but they are still there. I am feeling a little worried. The headaches could be increased by stress as well as the IVIG's. I have not had my eyes tested for a while..but don't seem to have trouble with my eyes..but I suppose you could just get headaches. We still have not had the MRI but will push for that to be soon. I was trying to just relax a bit since the drama. My IVIG is in a week and a half and I feel stressed about having another one because of the extreme reactions. OH dear.....waiting for the doctor to ring back about details to do with the IVIG and a new product. I also have some ulcers in my mouth which usually add to a headache...they are on the side of my tongue where it really hurts and my ear seems to hurt from it. So I have something to numb it which does help. I have not had them for ages, literally and think it must be the stress from the headaches and stuff. I am really tense in my muscles and think that may be regular, gentle massages would help. So Alan and I talked about finding out about all that. It may help me be more relaxed and sleep better and have less headaches....we both know the MRI is still a priority...just trying to help other areas as well to get rid of headaches.
Then a week a go I noticed that Isaac's front tooth was discoloured and was really discouraged. I know that a couple of weeks a go at church he had a head on collision with another child and had blood in his mouth. However, Alan and I couldn't see anything wrong with his front teeth.....must have bumped it then...surely. It is quite discoloured now and I am sure the nerve has died. I rang the dentist and have him in for an appointment tomorrow at 4.45pm. They will do an x-ray and will be able to see the nerve and what it is doing. He has a beautiful smile and when he smiles he shows his gums and his teeth and I am so sad about his tooth. Hopefully we can do something about it so it doesn't look awful. They may be able to whiten it and then he will not feel weird about it. He has been good....it doesn't hurt or feel strange...he tells me...we have been practising how we will do at the dentist. This will be his first proper visit and i am a little anxious. People have told me that his tooth is not too noticeable but it can be seen. I know some people will read this and think, "it will be ok"...and I know it is a baby tooth and will fall out and be replaced one day but as a mum, anything that happens to teeth...baby teeth or not...it can be very upsetting. I went to see a friend on Monday and her child and Isaac play together and she said when her child chipped his tooth she was crying like I have been and she understands the "mummy blues". That helped. She and I are very similar with our feelings and I appreciate her supporting me. So I am trying to not get too upset and see what the dentist says as well...Isaac has a good mouth of teeth...very healthy...so that is good.
On Monday night Isaac woke at 11pm with croup. That is always scary and we sat in the bathroom with the steam which didn't seem to work as well as it usually does. Isaac's G.P gave us some baby prednisolone last winter to use for croup when the steam doesn't work....so we don't have to go out in the freezing cold to the hospital...Isaac communicates now and tells me how he feels and he was a bit panicked. He asked us to call our doctor friends...which was good because we know they are up late (not calling just because Isaac asked) and I didn't know the new dose of prednisolone for Isaac's new wait...so we rang and they said we were doing everything right....told us the new dose and we gave Isaac the medicine. If he still had trouble with breathing an hour or two later we would go to the hospital...I would call the ambulance so he didn't have to be in the wintery, freezing cold. I think that is better for croup. But we didn't have to. The medicine worked as well as the humidifier and Alan slept in the room with him to make sure he was ok...we got to sleep late but it all worked out. Isaac is a lot better today.
So, we have a visitor coming tonight and I am going to go relax. Please pray we get the headaches sorted out. Although, my week doesn't sound like it has been too relaxing and that probably doesn't help.
I hope you are all doing ok!
Love Charisse
Sunday, July 1, 2007
Health Update
Evening......
I am very tired tonight. I had my IVIG infusion on Friday and remembered to take my pre-med on Thursday. I take 5mg of Prednisolone 3 times during the day on Thursday...it helps taking it the day before to try and stop all the pain and inflammation I get from IVIG. I have had horrible reactions lately and my haematologist was suggesting we change to a different IVIG product to see if we can reduce them.
The doctor who "admits" me to the day center for the infusion is an oncologist...head and neck cancer actually....pretty good to have someone on board with this issue and FA...since it is a big issue with FA. Although I don't have head and neck cancer..he just helps with me being in a private center to treat the IVIG problems. He is a good doctor and has been reading up on every aspect of FA and is very supportive. He is monitoring this fungal infection on my scalp right now. I put cream on it 2 to 3 times a day. I have had it for ages...it is taking a long time to clear up but when they swabbed it is came back as fungal...anyway..off the point. He suggested we add another concoction to my pre-med on the day and try some dexamethasone IV as well as the hydrocortisone...to reduce the inflammation I get with the IVIG. It certainly was a weird drug to have IV. I have given it as a nurse but never had it and it made me feel very strange.
I am SO tired from the IVIG now. I have not had heaps of pain though which is good. I just need to shut my eyes all the time. I had some pain but seem to be having a better run this time.
Isaac came and visited me in the day center again. He is always quick to say he doesn't want a bandaide and I tell him it is only for mummy. He associates the visit with cake...hehe....but unfortunately it was not served when he came to vist. I brought him some home with me. He is brave seeing mummy hooked up to an IV and he sits on my lap. It is nice to have him visit me.
Well, I am tired. That is all for the update.
Love you all,
Charisse
I am very tired tonight. I had my IVIG infusion on Friday and remembered to take my pre-med on Thursday. I take 5mg of Prednisolone 3 times during the day on Thursday...it helps taking it the day before to try and stop all the pain and inflammation I get from IVIG. I have had horrible reactions lately and my haematologist was suggesting we change to a different IVIG product to see if we can reduce them.
The doctor who "admits" me to the day center for the infusion is an oncologist...head and neck cancer actually....pretty good to have someone on board with this issue and FA...since it is a big issue with FA. Although I don't have head and neck cancer..he just helps with me being in a private center to treat the IVIG problems. He is a good doctor and has been reading up on every aspect of FA and is very supportive. He is monitoring this fungal infection on my scalp right now. I put cream on it 2 to 3 times a day. I have had it for ages...it is taking a long time to clear up but when they swabbed it is came back as fungal...anyway..off the point. He suggested we add another concoction to my pre-med on the day and try some dexamethasone IV as well as the hydrocortisone...to reduce the inflammation I get with the IVIG. It certainly was a weird drug to have IV. I have given it as a nurse but never had it and it made me feel very strange.
I am SO tired from the IVIG now. I have not had heaps of pain though which is good. I just need to shut my eyes all the time. I had some pain but seem to be having a better run this time.
Isaac came and visited me in the day center again. He is always quick to say he doesn't want a bandaide and I tell him it is only for mummy. He associates the visit with cake...hehe....but unfortunately it was not served when he came to vist. I brought him some home with me. He is brave seeing mummy hooked up to an IV and he sits on my lap. It is nice to have him visit me.
Well, I am tired. That is all for the update.
Love you all,
Charisse
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