Day 42: May 18, 2012

Day 42                                                                                                  Written May 18, 2012 7:00pm

Dallas didn't have a good night at all.  Travis laid in bed with him throughout the night, but Dallas was so extremely itchy that he didn't get any sleep at all.  He slept maybe two hours total over the night.  That also meant that Travis didn't get any sleep.  

Also, last night the doctors came in and told us his hemoglobin levels were low again, dropping to around a 6.9.  So they wanted to give him a blood transfusion again.  This time, he would have to get another unit of blood; this makes 12 units to date.  The doctors aren't even sure if this will be enough, or if he will need more in the future.  It begins to get more and more frustrating.  Dallas accepted the blood pretty well, however, and seemed to be a little less lethargic.  

This morning, Dallas ate a few bites of applesauce, and about 10 fruit loops for breakfast.  He drank a little apple juice as well.  Yesterday, the nutritionist told me that what he had eaten the day before accounted for 50% of his caloric needs and 76% of his protein needs, so hopefully he will continue to do better and better with eating.  
The doctors have advised us that they would cut back on his feeds again tonight, going back to 50mL/h.  Maybe this will help allow him to get hungry.

Dallas' dressing change was more traumatic this time than it has been in a long time.  Dr. Zeller came in with some of her residents so they could take off the remainder of the Aquacel and so that she could see the areas of concern.  During this dressing change, we have noticed more and more granulated tissue forming, which is a major concern to us.  She treated a few areas with the silver nitrate, which seemed to hurt him pretty badly.  The doctor and residents said that it may be uncomfortable, but when they applied it to those areas, he screamed out in complete pain.  He started jerking around and it hurt so much in some areas, that he couldn't breathe.  It was one of the most painful things for us to see, knowing there's not much we could do.  I just wanted to hug him and tell him it would be alright, but I couldn't, there was no wrapping my arms around him, there was no kissing his boo boos.  We had to sit there and try and talk him into being calm.  Taking off the Aquacel was another hard thing for him.  There were areas that were still stuck to his donor sites, so when they were pulled in those areas, he began bleeding.  Once he saw the blood, he flipped out again.  He said he was scared of the blood, and had this look of terror on his face.  He did manage to take off a few areas of the Aquacel on his own, calming him down somewhat.  This dressing change ended up taking about an hour and a half due to the extent of it, not a very good experience for him.  However, on the bright side, once we were ready to put on the white bandages (Kerlix), he was so excited that he started to dance.  :) 

Once we finished his dressing change, we asked Dallas if he wanted to wear boxers.  He was so excited and had the biggest smile on his face.  So we put them on him.  We also put new socks on him.  We think that giving him some normalcy back will help with his recovery and his will and strength.  

After his dressing change, Dallas did physical therapy.  He wanted to walk to the playroom, so we put some shoes on him, and he started to walk.  Dallas wasn't able to make it to the play room, his ankles started hurting very badly, as well as he was getting very lethargic and shaky.  So he walked back to the room, but overall, this was still a great accomplishment, as it took a lot of strength to get around like he did.  

My mom brought Mac to visit Dallas.  He was alseep when they got here, so Mac played with Legos, and visited with us for a while.  I know it's so confusing for him, to not understand why he can't go home, to not understand why he can't stay with his Mommy and Daddy and stay with his brother.  We are trying to spend as much time with him as we can, and trying to get him to understand everything, but it's just so confusing for him.  Thankfully, we have had help with him and Kiana, otherwise, it would have been so much harder on all of us.  

The nurse took Dallas' vitals not long ago, and his temperature was 101.3.  I am beginning to wonder if there will be a day when he doesn't run a fever at some point or another.  If a spike in fever is going to prevent or delay him going home, we're never going to leave this place.  

Dallas said he wanted spaghetti for lunch, since he didn't eat it for dinner.  So I went to cook it, and by the time I got back, he was sleeping.  He slept from 1pm to 6pm, so I'm sure he will be awake most of the night.  When he woke up, he ate a Spaghetti kids cusine and drank tea and mixed berry juice.  After that, he played some games with daddy, and he will be resting soon.  Hopefully he will get a good nights rest.