Whew. What a week. Corrigan, despite our best attempts at living in a bubble, has fallen victim to some sort of baby-hatin’ virus again. Earlier in the week he just seemed a bit “off” and we automatically went into CIA-operation Treadstone mode and watched like madmen, kept notes on all of his behaviors and slept fitfully waiting for Jason Bourne to jump into the East River…wait…uh….something like that. We watched to see if Corrigan were coming down with something evil.
Sure enough ,the following day he had a runny nose and low-grade fever. By end of day he was coughing, by early next AM he was vomiting and it was off to the ER. Again, I have to mention what a complete blessing the medi-port has been…we arrived at the ER around 5:30am to register and by 6:02 we had an ammonia result finished from the lab. That folks, is AMAZING.
In prior trips to the ER the attempt to get a blood sample, let alone an IV in, would take more than an hour and several people from other units. I would be standing behind the small crowd of people, tears in my eyes and praying fervently for a vein to appear as person after person, wiping sweat from their brows and tears from the corners of their own eyes, would one-by-one stand up straight after their attempt and quietly say, ” I can’t find anything”
This time….this time was so fast and so pain free ( but nearly not so because I forgot to apply the numbing cream before I left the house to make the before-sunrise screech across town…in my hurry and worry I nearly remembered too late that the cream would spare him even the prick of the needle and applied it in time that his only “pain” was that he needed to be held still by three strong grown-ups while they popped a needle into the port, stole some blood and patched him all back up) five minutes, tops. Woooooo hooo!
The ammonia was even better than the previous week’s well-appointment and came back an awesome 32. However, he had a ear infection in his right ear and was fighting some sort of virus that was causing vomiting and diarrhea. They kept him on IV fluids for a few hours and then released us to come home after he managed to keep a few ounces of Pedialyte down without vomiting.
It was surreal to leave the hospital WITH a baby on my hip. Normally, I am rushing down to the parking garage as my baby is transported by copter or ambulance to Baltimore…to be able to walk out of the building with him, knowing that his ammonia was such an amazing normal number was just so cool. I think I smiled the entire way home.
Not to say that it has been easy. He has had a consistent fever for two and a half days now. I have kept him on a strict 6-hour regimine of Motrin but his fever sometimes breaks through the Motrin before the next dose is due which makes me realize that the fever is still there just below the surface waiting to pop back up and causes us problems. His vomiting has stopped and he has been eating very well but he is pretty miserable and achy and whiny. When this adventure all started, nine months ago, all we heard was that fever-producing sickness means hospitalizations…especially with metabolically unstable infants…and we did not expect to be able to ride out a virus at home for a few years. Each time I feel his little head my hands shake a tiny bit…I fear that fever every single time I reach for him…but it has been manageable. so far.
Corrigan has probably had a dozen dunks in the tub this week…nothing seems to perk him up faster than a nice warm bath and a rubber ducky to gnaw on. Combined with a dose of Motrin…the bath gives us a good hour of “happy baby” time afterward in which he half-crawls around (more Army-man crawls right now)gleefully…”shopping” on the shelves beside my computer for various baby-approved objects such as sharpened pencils, a pair of scissors (by the way that could possible be the FIRST time I have ever typed the word “scissors” in my life) and a stray container of arsenic or two. He even managed, this morning, to pull the entire Wii out of the entertainment center and fling it to the floor…I can only assume that he found its design flawed and tossed it away from himself because it offended his refined senses. Poor poor Mario Kart.
Even today he has a low-grade fever and it makes me a bit nervous, again, that we are trying to do this at home. It is not so bad in the daytime but I fear those long and dark hours that a fever could take hold and ammonia build up and race towards his vulnerable little brain.. as the toxic enemy takes over silently I will be laying nearby dreaming about random nothingness..oblivious that danger is a mere 3 feet away. Every hour is crucial once these kids become hyperammonemic…those dark dark hours in the middle of the night are the ones that haunt me the most.
I wish I better understood how some illnesses can knock him off of his metabolic-feet and send him packing to the hospital for days…and others, like this one, seem just as bad as the last if not worse, yet he is handling it wonderfully here at home. I know that we could easily end up at the hospital still, anxiously wringing our hands and waiting for the next ammonia result, but I pray that we will be able to finish this one out here…and that I will be able to keep those nighttime fears at bay because home is BEST…there just are not enough Wii’s to fling at Hopkins!
On another note I wanted to share another tesitmony about God’s goodness to us. Last evening, as I was wrestling a half-damp ,slightly-fevered and newly-bathed 9-month old into a too small flannel jumper I commented to Mark (who was sitting beside me most helpfully with his hands in his lap) that this poor child needed some new clothes. I had only recently purchased long-sleeved onesies in size 12 months for Cor and even though I try to make sure that I do not toss his clothing into the dryer they are already so tight on him that snapping them closed at his crotch causes his diaper to bunch up around his chin. It was time to buy some new stuff despite the recession…Corrigan has been spending his days sitting around the house in shirts that come way up over his belly and drooling unto his own bellybutton. Combined with the copious amounts of baby snot that he is leaking over everything he wears and touches and the completely frustrating amount of dog hair that seems to grow directly from the floor boards in the house…our little dirty baby looks like the perfect example of a child that CPS should visit.
Mark said that he would head out today to try and find some comfy clothes ( more just jammies and soft stuff because we do not EVER take him outside of the house so we have lots of nice “hey! here meet my well-dressed, snot-free, shiny baby boy” outifts but not enough “lay around the house for 11 days straight…hey! this onesie would be AWESOME to spit applesauce on!” outifts instead. We discussed that he might even need 18 month sizes due to his bodacious beer-belly but that we might have to roll the legs on 18 month old pants about 7 times because he has the leg length of a smurf. We were in the middle of a 12 month or 18 month discussion ( I know, Friday nights are insanely cool in my house, right?!?!) when there was a knock on the door. Connor answered it and there stood Petra and Monika and in Petra’s hand was a shopping bag and inside were, come ON you know how this goes, right?…..PANTS. FOR. CORRIGAN. in BOTH size 12 months and size 18 months.
Seriously, it was crazy wild to stand there and see her handing me pants when only literal minutes before we were discussing a desperate need for comfy PANTS. Insane but not unbelievable. Psalms 36:5 Your love, O LORD, reaches to the heavens, your faithfulness to the skies
Feed on God’s faithfulness. “God is faithful” means that God is what we can absolutely rely upon or stay ourselves. I am learning so quickly! If you do this you will never have need. God never promised us 3000 square foot homes or 4-course meals but he promised to meet our needs and His faithfulness is neverending. If you expect it and LOOK for it…you will be amazed at all of the ways that He shows Himself to be faithful to His word. I live my life expecting the blessings, and not in an arrogant way, but in a confident way because I know that my God lets nothing happen to me by accident it is all by design. Trust in God, He cannot lie and experience the beauty of watching all of the things that God does for you…thank you God for meeting a need that I only just moments before expressed through the amazing friendship of Petra and Monika!
Jonah still needs our prayers, friends. Praise the Lord that infection seems to be unable to take hold on his little body despite the many many sores and blisters that he is experiencing. He seems to be eating better, at more regular intervals but Mama and Daddy need lifted up in prayer. What they are experiencing is tough but they are doing a wonderful job FOR Jonah but need to take good care of themselves too.
http://patriceandmattwilliams.blogspot.com/ <—–Jonah’s continuing story is here
and that photo(above) needs a caption (leave one in the comments!)..everytime I look at it I hear Brain (from Pinky and the Brain) saying,