Day 70

Parker did great today! Surgery went well. They removed a very small portion of his bowel and put him back together. Appendix removed too. There are possibilities for post op complications, but we know Parker will stay strong. He is still on the vent and is being weaned off quickly. Thankfully he is tolerating the weaning well. He will remain NPO (no milk for him) for several days. Once the bowels start functioning we can start him up on feeds. Although this is a set back, it's a step towards home. He did great throughout the day. Has pain meds on standby when he needs them. Once again, we have such a strong kid!

Day 69

A much better day for Parker! No crazy desats and low heart rates. All the little man needed was some blood! He is so pink today! No more pale boy. It's amazing what a little blood can do. Parker has a big day tomorrow. He is going to surgery for his ileostomy take down. Time to put those intestines back together again. Its the set back we've been waiting for. But it is a good set back because it will help him get closer to home. We will have a long week in front of us because he will be ventilated for surgery and most likely a few days after. We also will have to let his bowels rest for several days before we can start feeds again. John and I continue to have high hopes for this kid. We know how strong he is and that he can overcome anything! What an amazing son we have!

Day 68

The roller coaster ride continues! Parker was acting up again and desating pretty low this morning. So he got the work up again just to be sure he's not getting an infection. Feeds were stopped, labs drawn, PICC line and TPN started. So far no sign of infection. His blood count was pretty low today, so he got 1 transfusion and will be getting another tonight. Hopefully all he needs is a little boost of blood. His nasal cannula flow was turned up to 2L. Not sure about the plan for surgery. Waiting to hear what the surgeon wants to do. His ostomy output has slowed down. We will most likely keep the TPN going just to give him the extra nutrients he needs to fatten him up. John and I are keeping our heads up during these low points. We know how strong our little boy is. He won't let anything stop him!

Day 67

Parker is always keeping us on our toes! His nasal cannula flow was turned down this morning to 0.5L and he did well until the afternoon. Then he decided to desat quite a few times. Scary desats too! So up on the flow we went. Desat again towards the change of shift. Praying that he does well through the night. No plans for surgery right now. His doctor wants him to grow some more. So we will wait and watch him grow. It's always a challenge with this kid. But we love him so do much!!

Day 66

Parker had a good day today. Had a lovely enema X-ray. I was able to go in with him. Poor kid, not fun having stuff shoved in places it shouldn't. What a mess it was to clean up this afternoon! Needless to say, he got a good bath! Thankfully the X-rays look well, so now we jut wait to hear when surgery will be. We still haven't heard from the surgeon yet. Parker's nasal cannula flow has been turned down to 1L and he continues to do well with that. Sometimes he decides to hold his breath and desat, but he always recovers on his own. He just needs a little reminder to breathe. We enjoy holding him as much as we possibly can! Such a sweet boy!

Day 65

Another nice day for Parker. He had lots of visitors spending time with him. I got to give him a really good bath today too. He actually didn't mind it too much. He loves it when we sit him in his little tub of water. Tomorrow he has a test to look at his intestines before we plan surgery. Hopefully everything will be ready to go. Everything else remains the same right now. Just waiting for surgery.

Day 64

Parker had a good day today. The only time he was in his crib was when we did his cares, and when we went to lunch. He's just so snuggly, we didn't want to put him down! The nurse this morning said that he took a full 30cc of his bottle. Such a champ! But because his ostomy has been putting out a lot of diarrhea, he's back to his continuous feeds at 10cc/hr. And he gets Imodium to help as well. John talked to the surgeon, and there's talk about him having his surgery next week to reconnect the small and large intestine. I'm a little nervous about surgery again, but he needs this and we know he'll do well. His lungs are getting stronger. He is off the high flow nasal cannula and on regular nasal cannula at 1.5L. Hopefully we can continue to strengthen his lungs before surgery. Glad for the good days he's been having.