We've been going through alot this last week.
1)Liam was released from Childrens and came home last Wensday
2)Big Sister Lanie wound up sick on Thursday
3)Lanie was perfectly fine on Thursday but Liam cought whatever she had...we think anyway
4)Liam continued to get worse then it seemed he was getting better. Our Ped though he was at the tail end of it.
5)Then Liam got worse again.
6)Liam had his PT eval. He will be getting physical therapy I believe once a week now
7)I tried him off feeds. He was back to him normal self. Laughing and playing and talking.
8)Started the Neocate Jr feeds back and within an hour he's miserable and vommiting and the circles under his eyes return.
9)I texted our Ped and got permission to put him back on his old regiment of Soy fomula (baby formula) and duocal and see what happens
10)Liam vommiting reduced by atleast 95%. He only vommited twice through the night instead of every 15min to hour.
11)He started desatting last night and finnaly at midnight I had to put him back on oxygen.
12)Waiting for the Ped to text back
Even after a week of no sleep, I was tollerating everything. But yesterday his pump decided it didnt want to work for awhile. I was upset, frustrated, irritated. I looked at Liam and begged him to eat. "Why cant you eat? Why cant you just eat?" As if just saying those words to him would change everything and he would suddenly start eating by mouth. I am ashamed I even asked that of him. Its not his fault he was made this way. And even though I know the doctors say its not our fault as parents for having CDHers but I have to blame someone and blaming God just doesnt sit right. I keep asking myself what I did wrong? Is this Karma? Do I even believe in Karma? I used to but since Ive done nothing to deserve to be going on this rollercoaster and am on the rise anyway, its hard to believe such a thing exsist. Besides my 4 1/2 year old didint do anything to deserve having her mother torn from her at every turn.
Now theres the oxygen issue. Its like we took several HUGE steps back and that it all started with formula change. Why cant the doctors just leave well enough alone?! One doctor says Liam can stay on baby formula until he's 2. Another says he has to be switched over now, another gives him maybe 2 months. All I know is Im sick of playing 'Musical Formula'. We went through this last year:
Similac
Enfamil
Enfamil Gentlease
Similac Sensitive
Nutramagen
Elecare
Enfamil Soy (any verson thereof)
Weve tried concentrating these formulas but he doesnt tollerate concentrated formulas so we had to start adding Duocal. Soy and Duocal was working perfectly.
And now since they decided he needed a big kid formula we've tried:
Pediasure
Pediasure Pectite
Neocate
Neocate Jr
All of which are concentrated. The Neocate is whats called an elemental formula, supposedly easier to digest. So was the Elecare and he couldnt handle concentrate. They said that if you add Duocal that it changes the formula and isnt a elemental formula after the addition. The other problem is that we know Liam doesn't have an actual food allergy to lactose but he has an intollerance and they dont make a soy based big kid formula.
"Hello Rock"
"Hello Hard Place"
So as of right now, Liam is back on soy baby formula with Duocal. That is until we see GI on monday and he decides to mess with it all over again.
Then bring on the oxygen. Here we were at the doctors office monday just talking about Liam's lungs. Our Ped made the comment
"Thank God his lungs are doing so well"
Infact we've all said it recently. But now here we are suddenly needing oxygen. Talk about a slap in the face. I know theres ups and downs on this rollercoaster, you just never get used to the blows. I should be thankful, I am thankful. In the grand scheme of things, Liam's doing wonderfully. Things could always be worse. We're gong to inch forward, and take giant leaps backward. This journey test your faith at every turn, tries to break it. I look at Liam, see his eyes, feel his head snuggled on my shoulder and I know, its worth it. Every second of this "torturous" journey is worth it.
1)Liam was released from Childrens and came home last Wensday
2)Big Sister Lanie wound up sick on Thursday
3)Lanie was perfectly fine on Thursday but Liam cought whatever she had...we think anyway
4)Liam continued to get worse then it seemed he was getting better. Our Ped though he was at the tail end of it.
5)Then Liam got worse again.
6)Liam had his PT eval. He will be getting physical therapy I believe once a week now
7)I tried him off feeds. He was back to him normal self. Laughing and playing and talking.
8)Started the Neocate Jr feeds back and within an hour he's miserable and vommiting and the circles under his eyes return.
9)I texted our Ped and got permission to put him back on his old regiment of Soy fomula (baby formula) and duocal and see what happens
10)Liam vommiting reduced by atleast 95%. He only vommited twice through the night instead of every 15min to hour.
11)He started desatting last night and finnaly at midnight I had to put him back on oxygen.
12)Waiting for the Ped to text back
Even after a week of no sleep, I was tollerating everything. But yesterday his pump decided it didnt want to work for awhile. I was upset, frustrated, irritated. I looked at Liam and begged him to eat. "Why cant you eat? Why cant you just eat?" As if just saying those words to him would change everything and he would suddenly start eating by mouth. I am ashamed I even asked that of him. Its not his fault he was made this way. And even though I know the doctors say its not our fault as parents for having CDHers but I have to blame someone and blaming God just doesnt sit right. I keep asking myself what I did wrong? Is this Karma? Do I even believe in Karma? I used to but since Ive done nothing to deserve to be going on this rollercoaster and am on the rise anyway, its hard to believe such a thing exsist. Besides my 4 1/2 year old didint do anything to deserve having her mother torn from her at every turn.
Now theres the oxygen issue. Its like we took several HUGE steps back and that it all started with formula change. Why cant the doctors just leave well enough alone?! One doctor says Liam can stay on baby formula until he's 2. Another says he has to be switched over now, another gives him maybe 2 months. All I know is Im sick of playing 'Musical Formula'. We went through this last year:
Similac
Enfamil
Enfamil Gentlease
Similac Sensitive
Nutramagen
Elecare
Enfamil Soy (any verson thereof)
Weve tried concentrating these formulas but he doesnt tollerate concentrated formulas so we had to start adding Duocal. Soy and Duocal was working perfectly.
And now since they decided he needed a big kid formula we've tried:
Pediasure
Pediasure Pectite
Neocate
Neocate Jr
All of which are concentrated. The Neocate is whats called an elemental formula, supposedly easier to digest. So was the Elecare and he couldnt handle concentrate. They said that if you add Duocal that it changes the formula and isnt a elemental formula after the addition. The other problem is that we know Liam doesn't have an actual food allergy to lactose but he has an intollerance and they dont make a soy based big kid formula.
"Hello Rock"
"Hello Hard Place"
So as of right now, Liam is back on soy baby formula with Duocal. That is until we see GI on monday and he decides to mess with it all over again.
Then bring on the oxygen. Here we were at the doctors office monday just talking about Liam's lungs. Our Ped made the comment
"Thank God his lungs are doing so well"
Infact we've all said it recently. But now here we are suddenly needing oxygen. Talk about a slap in the face. I know theres ups and downs on this rollercoaster, you just never get used to the blows. I should be thankful, I am thankful. In the grand scheme of things, Liam's doing wonderfully. Things could always be worse. We're gong to inch forward, and take giant leaps backward. This journey test your faith at every turn, tries to break it. I look at Liam, see his eyes, feel his head snuggled on my shoulder and I know, its worth it. Every second of this "torturous" journey is worth it.
Hello sorry to hear Liam is having trouble. It's so frustrating when they can't figure things out. Here's a suggestion... have you tried a blenerized diet on him? I've heard many success stories and felt I should bring it up. Maybe you could ask his dietician or doctor about this option. It couldn't hurt. Prayers as always!
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