here we go again

We had a regularly scheduled appointment at Hopkins on the 13th of August.  The appointment was a rough one…it took three sticks to get the initial blood draw and then the results came back very high.  Normal ammonia range is 0-30 for regular folk that do not have citrullinemia.  For Corrigan, anything under 100 is acceptable though I know that they prefer it to be under 60 or 70.  His result was in the high three hundreds. His doctor asked us to come back and she would do an arterial draw herself.  We were confident that this would produce a more "normal" ammonia result but were wrong. This time the result was lower but not much. Upper two hundreds this time around and that meant ADMISSION. *sigh*

They immediately began his emergency procedure and it took almost two hours to get an iv in his poor little body to administer his meds.  Thank God this was not some sort of emergency situation in which his levels were very dangerously high and time was ticking at a quicker pace to help him. 

Let me add that even with such a high ammonia result, Corrigan was perfectly normal. He was not symptomatic at all…which validates my fear that I simply wont KNOW when my baby is sick.

It took two hours and ten ( let me repeat…TEN) IV stick attempts before someone came in from the ER to find a good, but very small, viable vein in his foot. I know that after three sticks I would be punching someone in the head..and Corrigan showed his anger by screaming non-stop for the entire two hours. I do not exaggerate when I say that he screamed without break for that long. He was inconsolable and later suffered, what I believe to be, a hyperventilating event when he finally got into a room and tried to eat.

His heart rate increased and his breathing was way too rapid and shallow but I think that he was hyperventilating from hours of distress and gulping his formula. He has not had any breathing/heart episode since that inital episode.

He was put on monitors and bollusked his emergency meds. Within the next hours his ammonia was down to acceptable levels but they wanted to treat him with a slow feed of those meds, through IV, for another 24 hours.

His ammonia reading after the initial dose of emergency meds was 79.  His next draw reading was an awesome 39.  This morning his ammonia, after adding half protein back to his formula, was 48.  He was almost immediately back to normal…but still had to be watched.

It has been a very horrible admission. For reasons that make NO sense to me..on the first night of admission they moved another 3 month old to our room and it has been a bad Calgon "take me away" commercial since.  The babies cry but not at the same time. One cries, wakes the other…then alternate. 

Corrigan is very traumatized by this admission. He cannot sleep for more than 20 minutes at a time. He averages 9 minutes of sleep before waking in terror and being inconsolable for hours. Thankfully he is eating on time and full amounts…he is not dehydrated in anyway and seems otherwise fine now…but the stress of the hospital environment is too much for him to handle.  Doctors agree and are sending us to Dad's, about 30 minutes away, for the weekend so that he can get some rest with orders to return very early Monday morning for more labs before they dare let us come back home to Cumberland.

Also, I was surprised to learn that his liver is swollen and can be felt 3cm below his ribs. This is something that we have to keep an eye on and is a part of this disorder.

I havent showered since Tuesday ( its now friday evening) because there is simply no time. With Cor only sleeping mere minutes there is little time to do anything and i have to make quick choices. Do I want to run to the cafeteria for food, race to the hall to make a call, shower, use the bathroom or type out an email ( heck the laptop barely boots up before he is screaming let alone type something) and showering has been last on the list.  Its unfair to make the poor family next to us suffer with his horrible screaming for longer than needed and with all of his wires the nurses cant really move him and walk him around to calm him ( nor do they have the time) if I am not here.

There have been several things that have occured while staying here that have tried my patience and frustrated me to be at a hospital as well known as John's Hopkins and suffered through but the hospital is run by human beings and human beings make mistakes . I have to remember to be thankful that we live close enough to get him his care.  The most frustrating part of staying here is that when its time for a bottle you have to ask for one, then WAIT for one ( once we waited 40 minutes) and by then he is usually so livid and distraught that its hard for him to eat without gasping and taking in too much air.  I just cant understand how it takes so long, in a 7 bed unit, to get a bottle for a hungry baby but it does. 

I am not a nurse though..I have NO idea what they have to deal with outside of this room…and my request for a bottle might be the 12th thing asked of them in the last twenty minutes and they are working their way down the list but it still doesnt help to head off a meltdown by my emotionally traumatized little man.

When Corrigan was born we immediately noticed that he had an obvious aversion to light. even the dimmest light. As he has grown that sensitivity has stayed and he also seems to be highly sensitive to other stimulus as well. We spend a lot of time unclenching his little fists and massaging him to try and help him relax. He seems to suffer from high anxiety probably due to his traumatic beginning in life and I worry about the long-term effects of these hospital stays that he obviously cannot cope with. My happy baby turns into a weeping and screaming puddle when we are at JHU and it hurts to watch him suffer. The hard part is knowing that we have a lifetime of these hospitalizations ahead of us. I read somewhere that babies that have citrullinemia average 6 hospitalizations the first year of life not including the initial admission/diagnosis. Its going to be a VERY long year.

So for now, Corrigan is now metabolically stabilized and we are praying that his ammonia readings in a few hours will be "normal" and we can flee to my dad's for a few days so that mama can shower and little corrigan can relax with people that love him and wont poke him with needles.

Thanks for your continued prayers. We love you. 

 

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