Day 48: May 24, 2012

Day 48                                                                                                 Written May 24, 2012 8:52pm

Dallas did alright last night.  Travis kept him up until around 1am so Dallas would sleep in, since his sedation was schedule for 2pm, and we didn't want him waking up, not being able to eat or drink anything for hours.  Luckily, Travis' plan worked.  Dallas didn't get up this morning, and slept until it was time to go.

The anestheologist came in around noon and said that they were ready to go.  So they were going to get in touch with the doctors and see when they would be ready.  We went upstairs to the sedation room around 12:45pm.  The doctors weren't in yet, the occupational therapist was there.  Shortly thereafter, the resident doctor came in, and they gave him his medicines to get him to sleep.  It was much scarier this time, knowing that there wouldn't be an airway, that they only had a face mask to use for him.  I was terrified that he wouldn't be able to breathe properly.  Fortunately, he did just fine.  Dallas was in there a little over an hour.  They took his pick line out and put in a peripheral line in his foot, took the feeding tube out, made the mold for the face mask, took the remaining staple out, and did silver nitrate to the areas that needed it.  Dr. Zeller said she was pleased the way things were progressing, but he will definitely need more grafting on his right arm. 

Shortly thereafter, Dallas was brought back to his room and was awake.  He was in such a bad mood, very emotional, crying for his Daddy, wanting his Daddy to be in bed with him, to lay with him.  So Travis got him bed with him, and Dallas curled up to him and went to sleep.

Dallas wanted Sweet and Sour chicken for lunch, so that's what he had, again.  He ate about 1/2 of the chicken.

He's been playing games with Travis, walking to the bathroom (with support), and getting back to being Dallas.

There are some rough times, however.  There have been many times today when Dallas' skin got stuck to the blanket (due to some of the raw areas).  The IV in his foot has gotten caught on the blanket, causing it to pull and hurting him pretty badly.  He now has to take all his medications by mouth, which include Methadone twice a day, Adavan twice a day, Zantac 4 times a day, Zyrtec once a day, Vitamin C once a day, Zinc once a day, Attarex 4 times a day, and a multivitamin.  As well as a Klonodine patch that has to be changed weekly.  That is a lot of medicine to take in a 24 hour period, especially for a 5 year old child.  And all of these medicines have a very bitter taste (except the Vitamin C, which has a sugary strawberry water taste).  Dallas really hates taking all of these.  This will also be difficult, seeing that his Methadone has to be given at midnight and 6am (as well as noon and 6 pm), his Adavan has to be given at 3am (and 9am, 3pm, and 9pm), and his Attarex has to be given at 3am (and 9am, 3pm, and 9pm).  So Dallas will have to be woken up at midnight and again at 3am and at 6am.  This will be very trying for all of us.

They are weaning Dallas' Adavan.  They are hoping that in the next 10 days or so he will be completely off of it.  They will also have to wean the Methadone and Klonodine patch.  Dr. Zeller said that since he will have to have his right arm grafted more in a month or so, she is going to leave the Methadone levels where they are, and then afterwards, begin the weaning process.  Once the Adavan is weaned off, we will begin weaning him off the Klonodine.

Dallas ate the rest of his sweet and sour chicken for dinner, along with some shrimp teryaki with Travis.

He continues to be extremely itching, so hopefully the new cream (Elta) they gave him will help with that; though so far, it hasn't helped much.  They have also put a compression type dressing on, called TubaGrip.  That has seemed to help a little on his torso, leg, and arm, but his face is what itches the most.  So maybe, once he receives his mask, it will relieve some of the itching.

We still aren't sure when he will get out.  Sometime within the next few days is what we are hoping for, but there hasn't been anything set in stone.  They are monitoring his vitals, as well as seeing how he is doing with his medications, and nutrition.  So if all goes well, it should be very soon.  When we asked Dallas if he wanted to go home, if he was ready to get back, he said no.  He told us he didn't want to leave for 50 more days.  When we asked him why, he said it was because people come to visit him here.  How sad is that?  He's getting more used to the idea of going home though, and I think once he gets there, he will be much happier and will progress faster.

Even though Dallas is getting better, he still needs everyone's prayers.  Dallas has such a long road of recovery ahead of him, years worth of surgeries, physical therapy, occupational therapy, sun protection, etc.  Please think about him, and thank you all for your continued thoughts, prayers, help and support!  It has not gone unnoticed, and is certainly appreciated!