Liams having a bad day. He stopped tollerating the new formula we started last night this morning. He was off fluids for only 4 hours but hes already dehydrated and lathargic. His urine started smelling like poop. I just talked to the doctor and its worse than I thought.
Liams blood is turning acidic causeing the lathargia and the quickening dehydration
The doctor is doing a urine culture, stool culture and blood gas.
His blood is thick.
He is getting a picc line since hes impossible to get an iv in.
The plan for the rest of today is to start iv fluids and stick with pedialyte. Tomarrow if hes feeling better, theyll try another formula. Soy based.
Between all this, the coughing and sneezing that started this morning id say this is a food allergy. If his test is negative and it turns out as only an intollrrance than I dont want to know what an allergic reaction does to liam. 9pm
Theyre going to try to put a picc line in tomarrow at 2p. The picc line nurse asked me if I was holding up the process of getting Liam a medi-port. I said heaven no that Ive been fighting for one. She said she had reviewed liams case and hes better suited for a medi-port but the doctors are saying no. I teared up and said ive been arguing for one that I knew he needed one. She said the problem with kids getting poked all the time is not only that their veins blow but the scar tissue. I already know he has a ton of scar tissue because they commented on that this morning during blood draw. She said she will use ultrasound to look but doubts she find anything. She also said she would note on his chart that if he come back within a month that she refuses to do a picc that he needs a medi-port. Shes frustrated and see hows frustrated I am. Then around 7:45p Liam woke up retching and crying. Hes on pedialyte only and we have to work through it until he gets a picc line tomarrow for iv fluids. Im praying this is just a remainder from Liams bad reaction to the formula. I cant explain to you exactly how frustrating all this is. Its like a mountain just fell in our way. Things happen for a reason though. We dont always understand why and without faith we feel completly lost and dissoriented. I do feel lost in the dark right now but Im keeping faith. Or trying my darndest too. That light at the end of the tunnel, i cant see it but i believe its there. Poem by me witten 5/16/12 Stuck in a maze
Cant find a way out
Every turn is a dead end
No way out in sight
The rules dont apply
In this labrynth of our lives
No true path to follow
No guide books have been written
No clues to solve the mystery
Its confussing and frustrating
Infuriating and cruel
Our lives are no longer our own
Never will we be the same as before
I wrote that when I had Liam up at UCSF. He had been medi-vacced from Childrens there because everyone thought he needed his right diaphragm repaired. When he got there they were baffled. Liam recouvered quickly only to make a downward spirl a few days later. This is when he was sent home on oxygen. I was told by the surgical team, the CDH specialist, that Liam was a mystery. That he didnt even fit into the CDH "normal" and they didnt know what to make of him. I was used to hearing that from regular doctors, but felt the specialists should know. I was completly upset and lost. I felt that if they didnt know what to do, no one would. Since then Liam has continued to baffle the doctors. He suddenly stops tollerating feeds, or meds even after months. He gets sick without a cause they can find. He keeps the doctors on their toes. What baffles them the most is Liams ability to smile when they feel he shouldnt be able too. Its taken awhile for many doctors to realize that Liams smile is decieving. That when he stops smiling hes worse than they would ever ley a kid get. CDH leads us on this crazy journey that test us at every turn. Problem is with most CDHers, CDH is only the begining of their problems. CDH can accur by itself or more commonly in association with another defect. We have yet to figure out all of Liams so called defects, we might not ever know. To us Liam is Liam. Our little lamb with a grin that melts hearts. One day the suffering will end. We wont ever laugh when looking backing on this, but maybe we will understand better. Sent from Yahoo! Mail on Android | 
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