Elliot's 2nd Birthday

Today is Elliot's 2nd birthday!! My little man is two! It hardly seems possible. I have been reflecting on our posts from the week he was born and in the NICU and it blows my mind that it was two years ago!! He has grown into a rough and tumble, short and stocky, brilliantly mischievous, playful and happy little boy (and incredibly handsome I might add!).
This is the 2nd year that Elliot's birthday party was planned and had to be rescheduled because of illness. I am sure he will remember this in years to come and I am going to owe him big time! I think Grandma just might be spoiling him a little today, and Brian will make sure there is some birthday fun even though we will be celebrating again when Noah and I get home.
I also wanted to say how grateful I am for our family and all that they have done for us through all of the illnesses, feeding clinics, and hospitalizations over the past 4 years. I am so very, very grateful for all they have done for us!! We never could have done any of this without you!!
The doctors are saying that even if everything goes perfectly the soonest we will get to come home is early next week. They are putting plans in place for going home, but have said "he still has quite a bit of work to do here first". Given that, Brian is coming up tomorrow and we will be switching out for a few days so I can go home and see Zane and Elliot. It's going to be hard to leave Noah, but now that he is feeling better, I need to go see the boys. I am missing them like crazy!!!

Trial off oxygen

They have been trialing Noah off oxygen since yesterday and he mseems to be doing pretty well. He is working really hard in terms of breathing but keeping his saturations up. His lungs still sound bad, but are showing improvement daily.
In terms of the c-diff/colitis, they attempted to start him on some slow feeds last night and it wasn't long before he was retching and very uncomfortable. They stopped the feeds and put his tube to drain and let him sleep through the night comfortably. They are going to attempt to restart feeds today at a much slower rate to see how he does. They c-diff symptoms are still there, and if they don't improve in a day or so, they may have to come up with an alternative plan. This seems to be a particularly resistant strain of c-diff so we know it's not going to be easy to get rid of. He is has had it since before Christmas. There has only been about a week during this time that he went withought symptoms.
Although we still have a ways to go, I am thrilled at the improvement and it's so great to see him smile again!!!

RSV is slowly improving

Finally, a much needed restful night for Noah. His cough is subsiding and giving him some peace and quiet. He still has a ways to go in terms of breathing but it is definatly improving. It is so nice to see him restful!!!
Will update more later!

Bad night...

Noah certainly gave the docs a run for their money last night...He continues to have respiratory issues due to the RSV. Last evening he kepts having what we think were major bronchospasms and kept dropping is saturations. They were going to move him over to ICU but the pulmonary team came to look at him and increased his oxygen and switched him over to longer acting bronchodialator as well as gave him a narcotic to help him calm down and rest. He was able to recover from the incident and was not moved to ICU. They are not especially wanting to supress the cough for fear it will turn into a pneumonia, but the nonstop coughing is just too much for him. His respirations are still in the 60's at rest. The dr's keep telling me that the RSV will peak and then slowly improve, so we are all hoping that last night was the peak.
As for the c-diff, he is still being treated with the same regimen of IV Flagyl and oral Vancomyacin. He will come home with a picc line so that we can finish the IV Flagyl. When that course is complete they will continue a pulsing course of Vanc, where he is given a dose every 3 days for up to 6 weeks. His belly x-rays look better but he is still having diarrhea and lots of belly pain. For now he is still on the TPN, but the docs are hoping to start feeds sometime soon. It's hard to tell exactly where we are with eradicating the c-diff until the RSV improves.
Brian is at home with Elliot and Zane. Elliot came down with RSV as well (or we presume since they started symptoms on the same day). He is doing okay, but will see the Dr this morning to be checked over. He is also doing breathing treatments and struggling with high fevers. Zane (knocking on wood..) is healthy for now and should probably soak up the quiet time before his brothers are terrorizing him again! Which I hope is soon!!

C-diff and RSV

So in my last blog post I explained that Noah had been quite ill with c-diff and was in the hospital. He stayed 7 days from that admission and we were home about 3 weeks when he got sick again. The c-diff came back very aggressively again along with a viral lung infection that turned out to be RSV. Due to his chronic lung conditions he is having a very hard time with the RSV. He has been treated with Flagyl and Vancomyacin for the entire duration of the illness but it still does not seem to be effective enough to put the colitis in check. He was readmitted to the hospital 3 days ago. When he was admitted this time, his abdominal x-ray looked very bad, much worse than his previous bout. For the RSV he is now being treated with steroids, oxygen, and breathing treatments. For the c-diff he is being treated with IV Flagyl, Vancomyacin, and probiotics for now. We had a consult today with the infections disease team to come up with a new regimen to get this under control. They did also place a picc line in order to give him TPN and lipids and let his gut rest from tube feeds.
Overall, he is just miserable between the relentless coughing and abdominal pain. I am certainly looking forward to healthier days....

C-diff/Colitis

Noah has been sick off and on for the last several weeks and tested positive for c-diff last week. He started oral Flagyl right away and after 8 days, there was still no improvement. On Wed, he got quite a bit worse and his pediatrician wanted him admitted. They didn't feel comfortable having him admitted at home, so they sent us up to U of M Wed night. Since then they have started Vanco and IV flagyl and IV fluids. He has had fevers off and on, belly pain and the ever-present diarrhea. The decision was made this morning to take him off tube feeds altogether and start TPN to let his colon and stomach rest. I am not sure how long he will be here. C-diff is so rough on anyone and Noah is having an especially hard time with it. Hopefully the weekend will bring some improvement!

Where did the time go?

Holy smokes have I let the blog go by the wayside! I promise that I always have the best of intentions, however, thinking and doing are apparently two different things..
ANYWAY...
All is well with the Bakers, the boys had a spooktacular (bad joke) Halloween and I am sure there is enough candy around here to fuel a small army at least. Noah came up with his costume idea all on his own and Elliot wore an old hand-me-down Elmo costume of Zane's, the original owner. Zane went back and forth and finally settled on Davy Crockett.
We've had LOTS of illnesses, too many to count and both Noah and Elliot have had tubes in their ears over the course of the last few weeks. Both recovered beautifully and neither have been ill since **knocking on wood**. Elliot will actually be making another trip to the OR this coming week for an inguinal hernia repair. Poor guy is following in his brother footsteps. Noah had the same procedure done last year. I am hoping **again with the wood knocking** that this is it for awhile at least and we can get through the rest of the winter without any major illness and surgery.
Both Zane and Noah are having a great school year. Noah continues to thrive and we are seeing big changes in him! I love it!
We have made some changes in Noah's tube feeding and for the first week we saw huge advances in his oral intake. We didn't change his calories at all, just the time in which he was getting it. He's not doing quite as well as he was in the beginning, but it's still better than before we made the switch. All in due time I suppose!
I will try to get some Halloween pics up this weekend!!