Re-admit Day 5

Jaime's been back in the RCNIC for 5 days now. A lot has happened. He was, as we all know, diagnosed with re-herniation, he had lots of labs...one revealing that he has a platelet disorder just like me. (UGH, more hematology issues-this time I had to get labs, too), it has been decided that his gross motor skills are so delayed because of his anatomy...as his fascia is not yet closed inhibiting movements like rolling over and kicking his right leg. Also, he does not have much range of motion in his right hip due to this...today, hematology ordered ultra sounds of both hips to check for bleeding....just in case. Joint bleeds are so easy to get in hemophiliacs and there is always a worry when a joint lacks range of motion. I didn't get the official results from the hematologists, but I believe that it was "normal" with some calcification in the joint.
Let's see....what else....hmmm....oh, yea, Jaime has developed quite a cough. Stacy and I were up at the hospital until 3:30 A.M. yesterday because he was having some respiratory distress with his cough...then he would choke, gag and finally throw up. He was much better today...still coughing, choking, gagging and throwing up....but nothing like last night. A "rigged" cool mist has been set up for him and we've raised his bed in hopes that this helps him.
Jaime had a good hour or so of playtime with Noelle (O.T.) and Angela (P.T.) on the floor mat this morning. I think they wore him out because honestly he slept the rest of the day, highly unusual for him, but after a long restless night...he may have needed to just catch up. He's still pale and his H&H are slowly starting to lower...too many blood draws....this, too may be contributing to his drowsiness. They are trying to hold off giving Jaime a blood transfusion until he's a bit closer to his surgery date. Which by the way, is scheduled for Monday at 1:00 P.M. barring any unforeseen issues....like if his cough gets worse or he develops a fever or something.
Speaking of his surgery, Dr. Tiao is back from China...yea! I was able to talk to him first hand about the "why's and what now's." He thinks that the re-herniation occurred so quickly because of how the patch was placed. On x-ray they can not tell if the patch detached or just isn't sitting tight enough. Jaime's repair was highly unusual, causing the drs. to make immediate decisions as how to close him up. They are thinking that there might have been an area that had less integrity than they thought. They will not know anything for sure until they are back in the OR. He will be having his fascia closed at this time. Once in there, they will determine how to repair and close Jaime once again. Dr. Tiao is thinking about adding another patch over the current one to double secure it...again, nothing is for sure. Rumor has it that this is Dr. Tiao's first and only re-herniation...way to go Jaime! Nothing like giving the poor surgeon new statistics. If it's a 1% chance of something...you can bet Jaime will be in that 1%.
In other news....Jaime had apple sauce tonight. He didn't eat a lot, just a taste more or less. He likes it, but it happened to be just after a cough/choke/gag/vomit session. I don't think he was entirely up for it...but he sure looked funny sitting in a high chair in the NICU.
Anyway, moving on...Jaime lost more weight today. He weighed in at 12.9 today. He was admitted at 13.2. By accident I discovered that Jaime's intake had significantly increased since being admitted. Having said that...we can attribute some of his vomiting to that. He is not used to taking that much volume and he's teething...the bottle is more of a comfort thing, initially they were letting him "ad lib" with his eating. Today, I asked them if we could increase the calories and limit his intake to no more than 4oz. every 3 hours while awake. This change is made in hopes that he will retain the volume and calories, so that he can grow. There has been some talk of inserting a g-tube, but nothing has been finalized.
Anyway, that's all for now. I went to this new photo site and added the following slide show, I hope you are able to view it. Seems to me like the show's photos are out of order even though they are right on the site. Oh well, you get the idea! Enjoy and good night!