Rough few weeks

J

just1more

New member
Well, I figured it was time to post an update after several very long weeks and some changes in our plans as a family.

In mid-Jan Micah was hospitalized for severe liver complications related to CF. We spent 3 days in the PICU, and then a week in the hospital. There were several scary points and it was the sickest we've ever seen him.

They were able to get the liver 'stable', however, the only trigger for the crash anyone can find is that he had a pulmo infection growing that was not bad enough to show signs yet. Thus we can't know if or when this will occur again, and the doctors have been honest they were worried this time.

At this point we are just finishing 3.5wks on IV's, and they are moving him to quarterly IV abx to try and slow the progression. In addition, we found out yesterday he has an appointment with the CFRD clinic on Friday that was scheduled after reviewing his chart and recent hospital stay <img src="i/expressions/face-icon-small-sad.gif" border="0">

Ultimately, this all adds up to the reality that Micah's battle with CF is not going well so far in 2012; and the progression is very worrisome.

Because of that I have notified the medical school accepted me that I will not be starting in August as I need to focus on my family right now. I have asked (will know in about 2 weeks) if they will allow me to defer and consider starting in 2013; but for now the road ahead will take 100% of our time. Therefore, my family is moving from GA -> NY where I've been working since last summer in the coming weeks.

Thank you all for your thoughts and support; and if anyone has seen this kind of rapid fire progression your ideas (here or via PM) would be appreciated.
 
J

just1more

New member
Well, I figured it was time to post an update after several very long weeks and some changes in our plans as a family.

In mid-Jan Micah was hospitalized for severe liver complications related to CF. We spent 3 days in the PICU, and then a week in the hospital. There were several scary points and it was the sickest we've ever seen him.

They were able to get the liver 'stable', however, the only trigger for the crash anyone can find is that he had a pulmo infection growing that was not bad enough to show signs yet. Thus we can't know if or when this will occur again, and the doctors have been honest they were worried this time.

At this point we are just finishing 3.5wks on IV's, and they are moving him to quarterly IV abx to try and slow the progression. In addition, we found out yesterday he has an appointment with the CFRD clinic on Friday that was scheduled after reviewing his chart and recent hospital stay <img src="i/expressions/face-icon-small-sad.gif" border="0">

Ultimately, this all adds up to the reality that Micah's battle with CF is not going well so far in 2012; and the progression is very worrisome.

Because of that I have notified the medical school accepted me that I will not be starting in August as I need to focus on my family right now. I have asked (will know in about 2 weeks) if they will allow me to defer and consider starting in 2013; but for now the road ahead will take 100% of our time. Therefore, my family is moving from GA -> NY where I've been working since last summer in the coming weeks.

Thank you all for your thoughts and support; and if anyone has seen this kind of rapid fire progression your ideas (here or via PM) would be appreciated.
 
R

Rebjane

Super Moderator
I am sorry Micah has been so sick. You guys have been through alot. I don't have any answers but I hope things improve.
 
R

Rebjane

Super Moderator
I am sorry Micah has been so sick. You guys have been through alot. I don't have any answers but I hope things improve.
 
J

JustDucky

New member
Sending you guys hugs...I'm so sorry that Michah has had such a rough road. It just isn't fair,....I hope the new IV plan slows his progression, he is just so fragile. I wish I had more to offer, but just know that all of you are in my thoughts and prayers.

Jenn 40 w/CF
 
J

JustDucky

New member
Sending you guys hugs...I'm so sorry that Michah has had such a rough road. It just isn't fair,....I hope the new IV plan slows his progression, he is just so fragile. I wish I had more to offer, but just know that all of you are in my thoughts and prayers.

Jenn 40 w/CF
 
A

azdesertrat

New member
Sorry Micah is having such a tough row to hoe.
Remember, God never gives us more than we can handle.
Micah & your family will remain in our prayers.
 
A

azdesertrat

New member
Sorry Micah is having such a tough row to hoe.
Remember, God never gives us more than we can handle.
Micah & your family will remain in our prayers.
 
H

hmw

New member
I'm so sorry that you've seen such rapid progression with Micah's cf over such a short period of time. How heartbreaking for you and your wife and it much be very frightening to him to be so sick and have a limited understanding of it all. <img src="i/expressions/face-icon-small-sad.gif" border="0"> I hope the move helps alleviate some of the stress by bringing all of you closer to your work.

I truly hope that the coming months show some improvement... The unknowns are very hard to live with.
 
H

hmw

New member
I'm so sorry that you've seen such rapid progression with Micah's cf over such a short period of time. How heartbreaking for you and your wife and it much be very frightening to him to be so sick and have a limited understanding of it all. <img src="i/expressions/face-icon-small-sad.gif" border="0"> I hope the move helps alleviate some of the stress by bringing all of you closer to your work.

I truly hope that the coming months show some improvement... The unknowns are very hard to live with.
 
T

TreasureGoddess

Member
so sorry. My son has had a rapid change for the worse in 2011 and now into 2012. I have to say it was getting overwhelming, being told by my kid that he hurts and I couldn't help and the doctors didn't have anything else to offer. We have gone for a 2nd opinion and now have results from a culture as well as a plan of action to target these specific infections rather than the usual same-med-for-all procedure which we just completed in Jan to bad results.

The new dr agreed that my kid shouldn't be this sick this long and is being aggressive and using common sense and a unique approach rather than what we've been doing for so long. I've got hope again. We go into a new hospital for iv & oral combo of meds to fight the mrsa, acromobactor & fungal growth in his lungs.

I know CF sucks. I also know at some point we are going to have to deal with the fact that there's not a lot we can do, but I was overwhelmed that we went from a healthy kid that occasionally had a cough to the health levels of a adult that'd been sick for years all in a couple of months. Our previous CF team was pretty much giving us the attitude that we just have to deal with it, and that when things got worse, THEN they'd work on a new plan. I even was told that I should be thankful that my kid wasn't worse, see how bad others have it.....etc.

I'm so glad your medical team is working to find out how to help your kiddo. Please know that our prayers here are coming your way for your family. Good luck with the move and postponing school. I am glad your medical team is researching, learning, looking for something to help.
 
T

TreasureGoddess

Member
so sorry. My son has had a rapid change for the worse in 2011 and now into 2012. I have to say it was getting overwhelming, being told by my kid that he hurts and I couldn't help and the doctors didn't have anything else to offer. We have gone for a 2nd opinion and now have results from a culture as well as a plan of action to target these specific infections rather than the usual same-med-for-all procedure which we just completed in Jan to bad results.

The new dr agreed that my kid shouldn't be this sick this long and is being aggressive and using common sense and a unique approach rather than what we've been doing for so long. I've got hope again. We go into a new hospital for iv & oral combo of meds to fight the mrsa, acromobactor & fungal growth in his lungs.

I know CF sucks. I also know at some point we are going to have to deal with the fact that there's not a lot we can do, but I was overwhelmed that we went from a healthy kid that occasionally had a cough to the health levels of a adult that'd been sick for years all in a couple of months. Our previous CF team was pretty much giving us the attitude that we just have to deal with it, and that when things got worse, THEN they'd work on a new plan. I even was told that I should be thankful that my kid wasn't worse, see how bad others have it.....etc.

I'm so glad your medical team is working to find out how to help your kiddo. Please know that our prayers here are coming your way for your family. Good luck with the move and postponing school. I am glad your medical team is researching, learning, looking for something to help.
 
P

PatrickM

New member
Hi Tom,

I am so sorry your son is having such a rough time. This disease takes such a toll on every family member, and it is so hard to see your child suffering. My prayers are with Micah.

My son is almost 15. When he was 12 he was hospitalized with liver failure. That was his first hospitalization not counting sinus surgeries. He was hospitalized in December. It was only that October we found out he had an enlarged spleen. It was all so scary and I had no idea his liver was even something we needed to worry about. He went from a fairly healthy cf'er to having ascites, needing a blood transfusion and something about bone marrow suppression. It was frightening and even as I write this I feel so afraid for his future. He also has esophageal varices (sp?). Anyway we found all of this out basically at once.

Fast forward 3 years later and he is doing pretty good. I am so afraid to write that, afraid I might jinx myself, but considering where we were and where we are now it is manageable. I can't really explain why he may have improved, as far as I know there aren't really any meds to slow the liver disease. He does take ursodiol but I was told by his liver doc that won't do a whole lot. Personally I believe he went in to liver failure because he was on zyvox and that may have been too much for his system. The doctors won't say for sure if that prompted the acites etc but we are very careful about which meds we choose for him, where they are metabolized etc.

I know every case of CF is different but maybe my son going through something similar and doing ok will give you hope. My heart goes out to your family.

Tara
 
P

PatrickM

New member
Hi Tom,

I am so sorry your son is having such a rough time. This disease takes such a toll on every family member, and it is so hard to see your child suffering. My prayers are with Micah.

My son is almost 15. When he was 12 he was hospitalized with liver failure. That was his first hospitalization not counting sinus surgeries. He was hospitalized in December. It was only that October we found out he had an enlarged spleen. It was all so scary and I had no idea his liver was even something we needed to worry about. He went from a fairly healthy cf'er to having ascites, needing a blood transfusion and something about bone marrow suppression. It was frightening and even as I write this I feel so afraid for his future. He also has esophageal varices (sp?). Anyway we found all of this out basically at once.

Fast forward 3 years later and he is doing pretty good. I am so afraid to write that, afraid I might jinx myself, but considering where we were and where we are now it is manageable. I can't really explain why he may have improved, as far as I know there aren't really any meds to slow the liver disease. He does take ursodiol but I was told by his liver doc that won't do a whole lot. Personally I believe he went in to liver failure because he was on zyvox and that may have been too much for his system. The doctors won't say for sure if that prompted the acites etc but we are very careful about which meds we choose for him, where they are metabolized etc.

I know every case of CF is different but maybe my son going through something similar and doing ok will give you hope. My heart goes out to your family.

Tara
 
J

Jane

Digital opinion leader
Hi Tom, thank you for the update. I am so sorry your son and family have been through such a hard time. I hope your move to NY goes smoothly and that you can find a good cf clinic soon so Micah can continue to be treated aggressively. I hope he improves very soon.
 
J

Jane

Digital opinion leader
Hi Tom, thank you for the update. I am so sorry your son and family have been through such a hard time. I hope your move to NY goes smoothly and that you can find a good cf clinic soon so Micah can continue to be treated aggressively. I hope he improves very soon.
 
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