I took several photos when we were at the hospital yesterday for our regularly scheduled clinic visit. I have not really documented as much of Corrigan’s citrullinemia experience as I probably should have over the last 17 months. Part of me sees the camera as intrusive, not being much of a photojournalist myself, I tend to shoot only when permission is granted. Corrigan cannot express his opinion on the camera intruding on his scarier life moments so I have kept it at home. Also, it is hard to hug, hold and kiss a frightened toddler when you are holding a big ‘ol camera in front of your face.
However, I knew that Corrigan was in a good place yesterday. From the moment that he woke it felt like nothing could go wrong with the day. Normally, even on plain old appointment days, my guts are all twisty and Corrigan must feel that stress because he is normally cranky and miserable too. Yesterday was different. It felt like we were simply taking a nice ride, on a nice day and everything was going to be fine.
Also, in a few years the new Children’s hospital at John’s Hopkins is going to be finished and all of the memories of the PCRU are going to be just that…memories. I want to have these photos to look back on one day and remember everything about this place. The good and the bad. The paintings on the walls, the smells and everything else.
so this is where Corrigan goes every 3-4 weeks for bloodwork, measurements and discussions with the dietician.
The Pediatric Clinical Research Unit is on the third floor of the Blalock building.
Corrigan acted very differently this visit. Normally, he wiggles and whines until he gets down and wants to play with all of the toys in the waiting room. This time, however, he would not get out of his stroller. The little red button on the side lifts the tray up for easier removal and when I tried to lift the tray he forcefully grabbed the edge and slammed it back closed. Several others in the office tried to gently coax him as well and all attempts to lift the tray were met with firm resistance. Corrigan knew. You can see it in his eyes.
Eventually I was able to talk him gently out and we did the usual measurements. It is crucial that the doctors get accurate measurements to determine if his dietary needs are being met. Corrigan (and all children with UCD’s) are kept on very strict diets and Corrigan’s protein intake is very low. It is not possible to completely cut out all protein from his diet because his brain would not grow and his body would steal what it needed from his muscles regardless causing major problems. Because his protein intake is very low…every tiny bit counts. It has to. Therefore, accurate measurements determine how well his body is using what he is getting and if he needs more or less depending on whether he is growing or not.
When Corrigan was much smaller we had to be sure that there was a blanket or something over the paper that is on the examination table. The slightest crinkle and he would become severely upset…now, he also knows that when he is strippped down to his diaper that something is going to happen as well…so for the easier measurements such as length and head circumference we leave his clothing on.
Above the procedure table there are ceiling tiles that are made to look like a beautiful cloudy sky. I know that they are meant to instill tranquility but Corrigan, once he spots them, becomes immediately aggitated as well.
He really hates the head measurements though. For some reason he will fight and wriggle to avoid that tape on his head. He is the same way with hood and hats of any kind. This winter should be great…if you see me out with a toddler and he is not wearing a hat…don’t judge me. The kid has issues, understandable ones.
Next, he is stripped down and weighed. I have a photo of that as well but I think that he would prefer I not share that one. His future wife might get a kick out of it though!
( Do you know that I pray for his wife nightly? I do. I pray that right now she is being raised by good people, has a healthy life and a true heart for God. I pray that he meets her in perfect timing and that they live a wonderful life together…I pray that she does not have the same recessive gene that I have…and that their babies are happy and brave and strong..just like Corrigan)
Then, it is time for the dreaded blood draw
Blood draws are not nearly as traumatic as they used to be since the port was implanted into his chest. We had a little bit of trouble this summer because the port is a bit “wiggly” ( not stitched well into his chest muscle ) but Tamara and Kris know exactly how to hold him (shoulders pinned tightly to the bed) to get the blood now..first time, every time!
It does not hurt Corrigan to have his port accessed. We use a prescription cream before we leave Cumberland that numbs the location super well…so that while Corrigan screams miserably it has more to do with hating being restrained than pain. We are very thankful for his port. This part of the appointment, in the past, could have taken nearly an hour and half-dozen sticks or more. Also, the tourniquet that is used when blood is drawn from an arm vein can cause issues with the blood and the finicky ammonia test (how long it is on, how tight etc can affect everything) and with the port those worries are out the window.
After his blood draw it didn’t take him long to recover. He got a toy for being so brave and this time we chose the Beanie Baby in the above photo. Corrigan love love loves the movie “Finding Nemo” and there is a part in the movie where the seagulls(???) are kind of stupid and only focused on food. They all chant “mine mine mine mine mine mine” over and over in the film, mimicking the sound of dozens of the birds on a rock or reef. Naturally, we had to name this similar looking bird “mine mine” in honor of Nemo and Corrigan swings him around by his appendages.
The longest part of the appointment is the time spent with his awesome dietician, Celide, whom he adores. Basicially, Corrigan plays in the room while Mommy talks with her hands.
The final part of the appointment is just waiting for the blood results. Like I said before, I was not worried about his ammonia…he has been doing so well…I knew it would be fine. It was 41. Last appointment it was 40…for awhile there his ammonias, at regular appointments, were in the 60’s and we did not like hovering in those digits at ALL. We are very happy to see him settling into the low 40’s. I would love to see him in the low 30’s but I will try not to be too greedy! ha.
We have to keep his port covered while it is accessed so we usually put his shirt back on to keep him from pulling on the tubing. We do not de-access him until we get the results back because sometimes we need to re-draw blood if the numbers come back high (false highs are common though not so much with port draws)…and with the port, if we need to re-draw they don’t need to stick him again. The problem is that with the shirt on it is hard to remember that he is accessed.
I admit that I have almost completely left John’s Hopkins without having his port de-accessed. Thankfully, at the last elevator before the parking lot it occurred to me and I ran him back upstairs. Whew. Close call.
When Corrigan saw the nurse he immediately wanted his Daddy to pick him up. Back to the scared baby look.
Safe in his Daddy’s arms.
See that brightly colored fish painting in the background? That is the sort of thing that I want to remember about the PCRU when it is long gone from this building. That painting was my company for many many wee-morning hours when Corrigan was little and was hospitalized, out on the floor just beyond the treatment room, those dreadful months not long ago.
Corrigan did not do well when he was hospitalized. He would not sleep. He hated everyone around him, the sounds, the smells and it made other people miserable, I am sure. I felt so terrible that his crankiness was keeping the other patients awake that I would disconnect his pumps from the wall ( they have a battery too ) and would walk the halls…often sneaking through the treatment room into this very waiting room. I would turn on the television to watch whatever might be playing at 3am…Jerry Fallwell or the ShamWow guy…while bouncing and rocking a distraught little baby. Sometimes, that fish painting would catch his eye and I would press myself up closely to it so that his infant eyes could adjust and view the bright colors. This painting kept me company, it’s painted cheerfulness worked hard to fight the gloom that I felt inside. It was something happy in the midst of misery, both Corrigan’s and my own.
I want to remember all of this. Perhaps not fondly…but remember it just the same. These appointments will be a part of his life for…well…his entire life. They might not be in this very building but they started here and I am finally able to document it all…without the guilt.