in the hospital…(all updates here)

 

We are at Johns Hopkins. We were supposed to be admitted last evening but there was a mixup and we were finally admitted at 7:45am this morning. (Long story…just imagine a really long tedious sigh from me as I refrain from besmirching this fine establishment.) 

Corrigan is accessed and all of his fluids are running. He has been awake since 4am and is pretty miserable (and hungry!)  He and I spent the wee morning hours on the basement floor of Children’s House trying to play quietly and not bother the other families trying to get some rest. 

I may or may not have fallen asleep in the toy pit around 5am.  I know I completely lost track of about 20 seconds of my life so I assume I was out.  It was okay though, Corrigan tossed a few Lego blocks on my face and all was well. 

Due for surgery at 1:45pm now.

update: 10:50am.  GI just called and pushed back his surgery until 3pm due to an emergency that needs priority.

Update: 8:58Pm.  Whew! What a day!

After they told us that Corrigan was going to be bumped back to 3pm for surgery we were frustrated but understanding. Corrigan is here for a routine, scheduled, procedure and an emergency is always priority.  However, he has not had any food since 10pm last evening, and he has to be NPO( no food) for 24 hours after surgery so the longer we wait for the procedure the longer this poor kid is going  to be hungry.

In the meantime, they drew labs and did a clotting test.  5 days ago, his clotting test came back that he was actually clotting too quickly.  They were not worried and said that they would re-draw when we got here to be admitted.  This time the results came back that he was hardly clotting at all. After two draws from his port they decided to do a peripheral stick because they had suspicions that the Heparin used to flush his port was messing up the results.

It took a stick in both wrists and both feet before they got enough (barely) blood for another PTT.  The results took forever to come back and, of course, they came back perfect. By the time we made it up to the OR it was 5pm.

His procedure went fine and recovery was a bit delayed due to the recovery room being so full and then, after we made it to Recovery we had to stay a little bit longer because Corrigan’s blood pressure was a little too low.

We made it back downstairs by 7pm and Corrigan’s pain meds were wearing off and he was suffering. It took awhile (and a big mess and bed change from his drain coming loose, ick!) but he finally got some morphine and is probably having vivid dreams about Bob and Larry (VeggieTales) talking to him in really slowwwwwww voices. 

I hope that he gets some good rest.  They say that each dose should last 4 hours and the order is written for him to receive that medicine “as needed” so it is good to know we do not have to call the doctor each time we feel that he needs a new dose but I also want to be very careful and not put any more medicines than necessary into his little body. I am hoping that I get clear signals as to what his pain needs are and can act accordingly.

The tube is in place and looks sore but is not as big as I thought it might be.  It is also not as long as the doctor said it might be, maybe 5 inches, so it doesn’t seem like anything too bulky or hard to hide in his clothing etc.

On another suprising note, when I went back to the OR to comfort Corrigan as he came out of anethesia the doctor showed me some frames from the taped procedure and printed me out some photos.  While doing some exploratory stuff they found that Corrigan has an ulcer right at the entrance of his small intestine (duodeum?) and about 2mm away, on the opposite side of the area, is a polyp about the size of a pencil eraser.  They did a biopsy of both suspicious areas and have sent them off to pathology.

I refuse to worry about this right now.  However, every single doctor that I have talked to said that an ulcer of that size, in that location would explain his lack of appetite or interest in food.

Unreal.

We are not doing anything about the ulcer until pathology returns the report. We are told that we may have the results by Thursday or Friday though it would not be unheard of for it to be a week.

Thank you for your thought and prayers today. It has been a bumpy ride, lots of glitches and delays, but what we came to do has been accomplished.  We have faith that tomorrow he will be vastly improved and that by Wednesday he will be ready to start eating again and we can get back home.

update May 4, 8:00 am:

Corrigan had a really good night. He was given a “refill” on his pain meds every six hours and the medicine seemed to work perfectly for the full six hours, instead of 4.  He even slept curled up on his tummy, strangely enough.  He did not cry once all evening and didnt seem upset at all when awake.  He has been singing in his crib for the last hour or so and watching ToonDisney on the room TV while playing with his pulse ox cord. 

I think I got 6 hours of total sleep last night so awesome!

Update May 4, 6pm:

Corrigan is now getting about 1/3 strength of his formula through his new gtube. Everything is going in fine and no vomiting or anything. He is still on Morphine. They tried to skip his 3:45 dose and give him onlyTylenol but he made it very clear that, by 5pm, he was in pain by banging on his tummy with both hands and screaming. The medicine kicked in quickly and he is now zoned out, again, watching soothing Baby Einstein videos. 

It looks like they will do 2 ounces every 4 hours through the rest of the night and tomorrow we will attempt to do feeding by mouth and finish up our training etc.  I thought that signs were pointing to us possibly leaving tomorrow evening (weds) but then when I spoke to someone else it looked like Thursday morning by their account.

Regardless, things are progressing normally other than his need for stronger pain meds at this point so that is a positive thing!

Update May 5 9am:

The doctor just came in and told us that if all goes well (after a 5pm ammonia check) we can go home this evening! Awesome.

Corrigan just had his largest feed through his tube at 8am.  They will do another 6 ounces at noon. Then, at 4pm they will switch over to his regular meds w/ formula and he will take a bottle of it at 4pm. At 5pm, if all of his labs come back fine we are free to go!

Corrigan just had his first food, by mouth, in 60 hours! He ate about 15 of his “crunchies” and a bottle of apple juice!

7 thoughts on “in the hospital…(all updates here)

  1. Thinking of you all day. have been checking your blog and letting know what it says while she is at work and she is letting me know from your phone calls. Keep strong.

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  2. I have been following your blog for awhile, but have never had the time to write. I just wanted you to know that I have walked in your shoes. My daughter had a UCD- CPS I, to be exact. She was 2 1/2 when she got her PEG tube. We thought it would be temporary, but it was permanent. It was a life-saver on many occasions. I also took pictures of her smooth, flawless toddler belly before the surgery. Ah, the memories. Sadly, she passed away 2 years ago – she lost the genetic lottery, to put a long story short. My other daughter is thriving with her UCD, no tube yet, and we are actually trying to see if she can come off her Cyclinex formula. She is 5 1/2 now and much more mildly affected. I am a mildly symptomatic carrier. It’s crazy that I grew up normal and (relatively) healthy and never knew.
    Anyway, I just wanted you to know that you are not alone and that even though this procedure is a tough one for Corrigan, it will be a good thing in the long run (I hope). Be sure to ask about getting a Mic-Key button when the wound heals. It will make life so much easier without having to worry about a tube sticking out.
    Prayers for a smooth recovery for Corrigan, and for you!

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    • Abigail, I am so very sorry for your loss. I am glad that you shared. I am also thrilled to hear that your second daughter is doing so well with her UCD! What great news! Thank you for your comment. It is always good to hear (even though we all realize it ) that we are not the first ones to go through this and until there is a cure, not the last.
      Thank you for your prayers as well! Corrigan is doing well this morning!

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  3. Pingback: A boy, a ball and a backpack. (a g-tube update of sorts) | Mooney=MC2

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