Well, that was not the shortest stay for us but it was certainly not the worst. Memorial Hospital 9am Thursday, home from Baltimore 5:15pm Saturday. Not awful.
Corrigan is doing much better. Those intial ammonia numbers scared us to death but he seems to have recovered quickly. I just do not know what to expect from ammonia “damage” in regards to his brain. Will any damage become evident shortly after the episode? or will the effects not be something we notice for some time? It is hard for us to not stress the “what if’s” of this situation. If the 322 was correct ( and I have some doubts…but they may be more wishful thinking than anything) than I would think that there would have to be some residual effects from such high ammonia. The ER doc told us he had never seen a number so high on someone…in fact, the highest he had ever seen was on a chronic alcoholic and his ammonia was slightly over 100 and he was unconscious.
If nothing else, the ammonia surely must be an irritant to the brain and we are expecting attention/temper/personality issues as he gets a bit older. How mild? severe? God only knows. For right now though, he looks great, he seems back to normal and he is sleeping wonderfully in his own bed right this moment.
When Corrigan gets labwork done, whether a well-visit or a hospitalization the ammonia test is, of course, the most important number but the second most important information are his plasma amino acids. This test takes several hours to run and during a well visit we do not wait around for those numbers if the ammonia is good…but during an illness they are a set of numbers I need to know ASAP. The past few hospitalizations have been that he shows high ammonia, he stabilizes quickly, he is sent home rather swiftly and then the day after we get home BAM! he will show signs of whatever illness his body was fighting…hence the high ammonia. This time, the sense is, due to the plasma amino acid results, that this was a totally growth issue and that he was not getting enough protein through his diet ( he is kept pretty low…the very minimum to allow for growth ) because he most likely had a growth spurt this last month and his body had nothing it needed from what Corrigan had to give. If the high number is to be believed than it would seem that the strictly metabolic/diet/growth related hospitalizations yield far higher (ie:dangerous) ammonias than when he is fighting a virus or bacteria. This really freaks me out because that would mean that if he misses even a little of his food/formula than he can become very sick very fast.
I was racking my brain ( because I forgot my food log in my haste to race to Baltimore) to remember if he had any difficult eating days in the past week or so and I do not recall him missing too many ounces of formula or spoonfuls of food…but who knows if that tiny swiff of carrots that I rinsed out of his bowl were the grams that would have kept him from becoming ill. *sigh* This is such a hard road to walk sometimes.
Anyway, his plasma aminos came back “rock bottom” They were through the floor. For example, his icoleucines were FOUR…when they should be between 37-140. That 37…that’s the lowest it should EVER be…and his was 4. FOUR. crimeny. Plasma aminos are the building blocks of protein and he had nothing left. It will take a few weeks of perfect diet for those numbers to repair themselves so we had to cancel our clinic visit that was scheduled for this week, we would be wasting our time taking him in for tests that would just show he was still recovering, so we are now going down the following week and hoping for much better results.
On a happier note, Corrigan is now in love with “peek-a-boo.” He loves when you hide behind something and pop out smiling but hiding behind your hands will not do at all. He is just like Connor was in that he was totally not buying that you went anywhere when you just put your face behind your hands…but boy, oh boy…if you duck behind a pillow or blanket you have made his day…his adorable little body tenses in anticipation, his head peeks ever so slightly to the side of the pillow he thinks you might appear, his little mouth smiling wide with glee…and when you appear exclaiming, “PEEK-A-BOO!” you might as well have told him that he had unlimited access to the toilet ( he LOVES the bathroom and everything he should not touch…the toilet is like a magnet to him) he is so happy.
During this hospitalization he began to try and do the “hiding” for peek-a-boo. As I sat in the chair beside his jail-crib…I noticed that he loved when I made a big deal about him standing up and popping his head over the bar to smile down at me…and then seconds later he would quickly pop back down on his butt and bounce slightly as if anticipating something. Then, he would sprout back up to standing position and peer down laughing…and if I made a big happy deal about it he would laugh even harder, sometimes falling backwards with delirious joy at his newfound trick.
Pretty soon I realized that when he was sitting..he seriously thought that I could not see him. Never mind that he was clearly visible through the bars on the crib, to HIM he was totally invisible…there was no WAY mama could see him if he were sitting on his butt and he would wait, bouncing slightly, until I asked dramatically, “WHERE’s CORRIGAN? I HAVE NOT SEEN HIM IN SOOOOOOOOOOOOOOOO LONG?” and as soon as he heard his name he would begin to stand as I finished the rest of my dialogue….once his face cleared the top bar I would exclaim, “THERE HE IS!!!! I MISSED HIM!” smiling as if my face would break…and he would burst into hysterical baby giggles, almost losing his balance every single time…and then dropping to his butt to play again. We had hours of fun with that one and I have to tell you that when your baby is hooked up to wires to monitor his breathing and heart rate…when his tiny chest is covered with tape to keep the IV in his port in place, when his eyes are rimmed in red from lack of sleep and his bottom is blistered from the meds dripping into his veins…when you manage to get a smile, a laugh…especially one that tips him over backwards with joy…you play that hand over and over again…you ask WHERE’s CORRIGAN?!?!? a thousand times if that is what it takes…and you thank God that something so simple can make things so fine.
Thank you Lord for whisking that ammonia away from his brain so quickly on Thursday. I keep thinking, “322 to 129 in 90 minutes” over and over again. What a blessing beyond anything I can explain with words that I have.
Thank you for safety in travel for both the ambulance and myself back and forth from Cumberland to Baltimore. I have NEVER EVER sat in a moments traffic on any trip, no matter the time of day, racing down to get to my baby in the Pediatric ER…NEVER…you clear the path time and again and I am so thankful.
Thank you for local doctors and nurses that take this situation seriously each and every time that we walk into the building. To those folks that follow his emergency protocol to the T and never disappoint the team at Hopkins. While we sometimes sit for 12 hours waiting for transport…please know how thankful I am that you guide the staff to stabilize him perfectly each trip.
Thank you Lord that we live close enough to Johns Hopkins to get Corrigan that care that we need…and that you have placed family and friends all around that area to support us when we are hospitalized. Thank you for blessing us with people that always check in, each time, and those that make the drive into a part of the city that I know is pretty scary to bring me Panera sandwiches and hugs…even when their own hearts are breaking at a tremendous loss they suffered earlier that day.
Thank you Lord that no matter how exhausting it can be to deal with these citru-sick events that you sustain me…you give me reserves that I did not know I had…you fortify me and I can feel the prayers of many lifting us up when things are tough. Thank you Lord for the believers that pray for us faithfully, in healthy times and unhealthy times, that keep us close to their hearts and care for us deeply.
Thank you Lord for my family…my husband that cleaned the ENTIRE house before I got home this evening…that rubbed my tummy because I have felt so sick for hours. For Big C’s hugs to welcome me home and calls from others to be sure that we made it home safely.
and Lord, Thank You for peek-a-boo.