Day 3 on the Pediatric Floor

When I posted last, it was in the afternoon on August 5, last Wednesday, and I explained how we were expecting to be transferred to the pediatric floor possibly by this weekend. Well, I got home at 5:00 that day and we all went out to eat, and at dinner, I got a call from the hospital telling me they were moving him right then! So we still had to go home, get Mark in bed, and pack a bag before I could make it back to the hospital. I arrived around 11:30 and stayed the night.

Although it is a very good thing Brett does not need intensive care anymore, it is a lot more difficult on us because someone needs to be here with Brett all the time. It is not required by the hospital of course, but with a private room and sharing a nurse with several other children, we are determined that he not be left alone for more than 30 minutes or so. Thankfully, they are making a special case for Gantt to be able to stay overnight. Siblings are not usually allowed. Also, Brett's room is right at the nurses' station, so if we leave to go to the cafeteria or whatever, we just tell them to please listen out for him since we will be gone.  We have many more "liberties" on the floor than in the NICU, as I also explained earlier. It is so nice for Gantt to have his pack and play to sleep in. 

Overall, we are getting settled in fairly well, although still "learning the ropes" as things are very different here. Brett is sleeping better in a quiet, darkened space, and he is able to do a lot more interacting. As hard as it is to sleep here every night, it is nice to not have to leave him, either. The CF doctors and nutritionists are working with his feeding protocol to help him gain weight. I talked with a friend today and was able to explain a lot about what it is that Brett's disease does to his body. If you would like to read a little more information about CF, go to this website for the most accurate and most recent information.

cff.org

 

Hi Everyone,

We are sorry we have been slack in updating the blog. Things were going really well with Brett, and he was actually scheduled to come home today, August 5. But then over the weekend after they took him off his IV fluids in preparation to come home, he did not continue to gain weight. Unfortunately, this is enough of an issue to delay his homecoming again indefinitely. One good thing is that he didn't come home only for this to happen and have to be readmitted to the hospital. This is the scenario the doctors are trying to avoid.

The other thing we are so happy about is that although he must still stay longer, it is not because he is sicker or critical in any way. He is about to be moved out of the newborn intensive care unit to the regular pediatric floor. The main reason for this is that he will be under the care of the pulmonologists and gastroenterologists that work with kids with CF all the time. There will be a lot more consistency in his care and hopefully a specific strategy to get him to absorb his nutrients and be able to leave the hospital. Whenever he gets sick in the future and has to stay in the hospital for a little while, these are the doctors who will take care of him then. It will be good for them to get to know him now while he is "well" respiratory-wise and before he leaves the hospital the first time, so that when he returns in the future, they will be familiar with him already. Also, we as a family will learn how things go on the pediatric floor so we will know better what to expect for our family when he goes to the hospital for inevitable respiratory issues/illness/infections.

On another note, I (Jennifer) had surgery last week to have my gallbladder removed. I had gallstones caused by my pregnancy and they were causing gallbladder attacks and a lot of pain. That surgery was successful and after 3 days of recuperation, I was pretty much back to normal. My mom came and helped while I was not able to take care of myself or the kids. She and Rob tag-teamed and got everything done during my convalescence.


Whenever a bed opens up on the 5th floor, Brett will be moved there. It may be as early as this weekend. This will be quite a change for our family. This is going to be better for us in many ways. Brett will have a private room with our own bathroom and place for Gantt to spread out (sleep in his pack and play, have other toys) and we can be a lot more comfortable. Mark will be able to come visit (he has not been able to see Brett since Mother's Day - close to 3 months ago now), and we can have visitors. we can eat in the room, watch TV or play games, lay down and take a nap, whatever. These may sound like small things, but these are things we have not been able to do all these months that Brett has been in intensive care!! We have to leave him just to go get something to eat.

We will be doing a lot more to care for Brett ourselves, so there will be more consistency in his daily schedule. We will get lots of practice caring for his special physical needs (feeding bottles, giving enzymes (right now every 3 hours), giving breathing treatments (3-4 times daily), giving chest physical therapy (3-4 times daily), administering medications through the g-tube and learning general maintenance of the g-tube working the pump), and practice caring for both babies before we actually have them home. We are going to be really comfortable caring for Brett before he comes home, so we will know better what our daily regimen will be like.

The only drawback to this change is that someone will now need to be with Brett pretty much all the time. That is going to be especially difficult for our family as a whole. In the nursery he is in a room with 10 other babies and under constant nursing care. On the pediatric floor he will be in a room all by himself, and the nurse will be responsible for 3 or 4 other children as well. We are not willing for him to be alone in this situation. This means I am basically going to be living at the hospital now - pretty much "moving in" with Brett. Although there are certainly great things about this situation, it will also certainly put a greater strain on our family. Additionally, although it looked as if he would be coming home this week, we are now looking at one more week at a minimum and a couple more months at the maximum maybe. There is just no way to know how long this process will take.

You may be asking yourself - what can I do to help? Well, if you or anyone else in your family is not sick, you can visit us sometime. In the NICU I am around the nurses and other people all the time. In a private room, I will be pretty isolated. Although I'll be hooked up technologically, it would still be nice to see a friendly face here and there.

Also, I am concerned that he will be in the hospital for a good while longer. If it was just a few days or a week, I am confident that Rob and I could handle it and take care of our family just fine by ourselves. But if it is several weeks to a few more months, we are going to need help. I am thinking that if this takes longer than a week or so, it would be really nice to have people who might help us sit with Brett - to give us a break, maybe even stay a whole evening so we can enjoy a "normal" evening here and there with Mark and Gantt at home. Or go out for dinner & ice cream with Mark and Gantt or whatever. Please let us know if you are willing to do this at some point. You would not be "responsible" for any of Brett's care. Obviously, the nurses and doctors are responsible for his care. It would just be staying in the room so a four month old baby is not ever alone. If he cries, you would be there to comfort him and hold him for awhile, play with him - as he is getting to be a lot more interactive and social now that he's older. Also, I will never be able to leave for awhile with peace of mind unless someone I know is with him. Even if you are a church member or a friend of a friend that I haven't even met, don't let that keep you from contacting me if you are willing to do this.

Thank you all for your prayers, encouragment, meals, etc. The support has been wonderful - from local friends bringing meals to far-away family and friends just sending encouraging words our way. We ask you to continue to keep our family in your thoughts and prayers, and keep checking for updates - we will try to get better at keeping you up to speed through this blog.

--Jennifer & Rob