It has been a real rough couple days. Sorry for the late updates.
First we will start with Mr. Joshua. He had a really good day on Friday. He was happy and played for a total of 3 hours in his high chair. Was loving his new Christmas toys, smiling and laughing. It was a good day.
Friday evening. I have a conversation with the transplant coordinator that really was a shock to me. He was relisted because he was off the list for a couple days and the realization that a heart could come at any minute and I would have to hand my baby off to another surgery was real tough to deal with. As it is a happy occasion it is EXTREMELY scary given all the circumstances.
Saturday morning. Joshua was obviously not himself. He didn't want to play, be held or messed with. He had also had a few really explosive diapers over the course of a couple days. (You know the ones where you have to shake your head and wonder how on earth the poo got in a whole 2 foot radius of the diaper when the baby is quietly sleeping!) Well as the day went on he became more irritable. I left for a while to be with the other kids and came back about 11 pm. He was trying so hard to go to sleep. He didn't sleep Friday night and napped very little through the day. Every time he would just get to sleep he would wake up screaming. Not the screaming because I am mad and want you but a real sad wimper like scream. He was surely in pain. After a while I noticed he was burning up. I took a rectal temp and it was 38.8 (101.8). Luckily my resident friend just happened to be covering Team 3 so I went out and talked to her and let her know that Joshua was really hot. (Joshua had a nurse who has maybe had him once several months ago. Not one that knows him well. She had a really busy night between Joshua and his partner who was causing major scares also!) The nurse came in and took an under arm temp (which is a waste with Joshua because he sleeps with his arms up in the air so he is always much cooler that way then the other.) It was only 37.0 so she told the Dr's everything was fine. About a 1/2 later she came in to check on him and did a rectal. She came up with 37.5 (99.5.....it needs to be 38.5 to be recognized as a fever and get Tylenol) They gave him some Benadryl to help him sleep. He was so miserable. After about 1/2 I was at wits end. I had them call the Dr again and she came in. She decided that he did look uncomfortable, so we should give him some extra Morphine for the pain since he couldn't have Tylenol because the nurse got a different temp than I did. At 2:00 am he was still screaming. He hadn't slept and his skin was HOT. I insisted that the nurse take his temp. She choose again, under the the arm. His under the arm temp....with it in the air was 40.8 (105.4!)! I would bet his rectal was a bit higher. So....at that point....he got some Tylenol. With that little concoction of meds he managed to sleep for an hour. The Rapid Response Team came in several times. His heart rate was 229, his temp was not going down and he was miserable. They ended up putting him on a cooling blanket and packing him with ICE while the Rapid Response Team evaluated him. Reed, a Fellow in the ICU, decided he needed to be admitted. And so at 7:20 am (and damn near frozen into shock) Joshua was admitted. He was listless pretty unresponsive. Come to find out looks like all the poop was getting counted as mixed diapers and he was actually not peeing. He had become pretty dehydrated and his sodium level was high 160's when the high acceptable level is 145. They started free water replacement so for every once of poop he got an ounce of water. His sodium did come down. They had to put him on Dopamine to increase his blood pressure so that he could get flow to his kidneys. Yesterday was a lot of fine tuning. Today he is off the Dopamine and peeing very well. He hasn't had any diarrhea but he still has a fever. His heart rate has come down. He was actually asleep last night in the 120's.....usually he is in the 140's. To top it all off...I am sure that he is breaking more teeth.
It is unclear at this point how long we will be in the ICU. It is nice to see all the familiar faces and be among friends again. I was hoping that it wouldn't happen until his new heart birthday.
And on the home front.....Mr Trevor. Before he came here had gone to the Dr and had a sinus infection. He did about 20 days of 2 different antibiotics and was better when he came here. He would have an occasional cough when we went out into the cold but nothing that I would consider serious. Saturday night he told me his ear hurt. I gave him some Tylenol and told him to let me know how it was the next morning. My dad said he complained a little but noting too much. Sunday evening about 5 Shyla called and said that Trevor had just had diarrhea and his ear hurt. They gave him some Tylenol and I went in search mode to see where I could take him to be seen besides the germy ER. I found out about the after hours clinic and had my dad bring Trevor down. We met with the Dr, she listened to him and asked if he had been coughing. A little...and I mean little. (Before when he was sick he coughed until he puked!) Well that surprised her since he has PNEUMONIA!! UGH. Then she proceeds to look in his ear and gasp. She said that must hurt so bad. Trevor says nope...the other one hurts. She looks in the other ear and makes another gasping sound. On a scale of 1-10 with 10 being the worst they could be.....he was a 9 in BOTH ears! She prescribed a special breathing treatment and a high dose antibiotic. One would think that the hospital pharmacy would carry what the hospital prescribes but that isn't so. We were the last appointment for that Dr and she left right away so I had to come pull favors in the ICU to get something different. By the time we got it all straightened out the pharmacy was closed. I brought in the new prescription today it was only going to take 2 hours to fill! UGH UGH UGH.
Please pray that both these boys get better soon.
Love and blessings,
Leah
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