Wednesday, October 12, 2011 --- Friday, October 14, 2011
Days 11-13
I've kind of settled down into some sort of routine these last few days. Since the visiting is closed between 10-12:30, that gives me time to get some things done in our room at the RMH and then walk over to the hospital and be upstairs in the lactation room (a private room for pumping) by 12:00. I sit in there and eat my lunch, text Jason and talk to him on the phone when we're done eating, and pump my milk all at the same time. So by 1:00 I'm ready to go into the NICU. When I get in there, Hazaiah's nurse comes to his room to talk with me and, soon after, the doctor comes too, and gives me any updates.
I've been able to stay at his bedside pretty much all afternoon this week.:) I really enjoy just sitting there, singing and talking to him, rubbing his little head, and holding his hand- well, actually he holds my finger with his hand.:) One day he was holding two of my fingers, one in each of his hands, for hours... I did get a cramp, but it was totally worth it.:) I get to be in there when the nurses come to do their checkups on him, and sometimes I get to change his little diaper or hold his feeding tube while he eats. My heart aches to hold him, but it's all I can do right now...
The children are allowed to visit between 3:30-5:00, in only 10 min segments. (This is hard for them; they don't want to leave him either. Please pray for them with this if you think of it.) We usually leave the hospital around 5:30, but this week, every time I was ready to leave, Hazaiah would open his eyes and look at me! Of course I couldn't leave him like that! So I would rub his head and talk to him and tell him it's time to go night-night and that Mama would be back after supper and Daddy would come then too... After a while, he would go back to sleep, and I would cover his isolette and then peek several times under the blanket to be sure he was really sleeping! That usually extended my visit by another half hour or so.:)
The RMH serves supper every night at 6:30, so I would try to leave in time to walk back "home" for that. They are extremely generous! They have volunteers who bring in the evening meal 365 days a year, and any leftovers are free to use for our lunch the next day, or snacks, or whatever. They also have a pantry and refrigerator full of breakfast and snack foods for the occupants. We can do our laundry here too- and I was surprised and thankful to find that they are not even coin operated machines! Anyway...
Jason gets here soon after I've eaten, and in time to go back to the hospital for the visiting hours that start again at 8:00. We usually stay for about an hour- to check on him, see who his night nurse is, and tell him goodnight. -There have been nights that we've not slept well, and I've cried a lot, because we weren't comfortable with his night nurse. But his "main" day and night nurses are great! -and we are thankful for them...:)
These last few days, the doctor's reports have been about the same...
He still has not had a bowel movement, and they don't hear any bowel noises when they listen to him. Even if someone has not been eating for several days, they would still make gastric noises. So they have given him a couple harmless enemas, and have increased his milk, to see if that would stimulate him to go. We are hoping this natural approach will work, and that he won't need meds to move things through... He did have a few "clumps" of meconium in his large and small intestine, and now they are saying that they are still not sure if it could be due to Cystic Fibrosis, or if there is something else wrong with his bowel...
His biliruben went up to 18 again, but they said that the "jaundice" part of that is only at 9, and the other is because he has his main nutrition through the PICC line, and so his liver has to filter all of that.
He is still basically on 25% oxygen, and being given 25 breaths a minute. That is not enough to keep him alive, so he is breathing on his own more than what they are giving him. They are now trying to see if they can give a little less support, and wean him off of the ventilator. His oxygen saturation does drop at times, and they insert a catheter down his breathing tube to suction out his lungs. That usually gets him back up to above 95% quickly. I guess this is a little scary for me... When they remove the ventilator, I wonder what they will use to suction his lungs? The doctor and nurses say his secretions are still pretty thick and sticky, but then the doctor said they don't usually have problems with mucous in the lungs in a CF child until they are a little older. So we don't know if that would be a symptom of CF at this point or not. All we can do is wait on the test results for that I guess...
Hazaiah is also developing some swelling- especially around his neck. This is something new... The doctor is not sure if this is just due to him being immobile, or if it's related to his heart...
We were told on Friday to think of what day next week would be good to have a meeting with everyone in order to decide what our "plan" would be as far as removing the ventilator. He can't stay on it much longer because there is always the risk of infection, and they believe part of the secretions are being caused by his body reacting to this foreign object in his airway...
Please pray for wisdom for Hazaiah's mama and daddy with upcoming decisions...
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