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!!

Sick of being sick!

We have been battling illness around here for months! Noah has been on 6 different antibiotics since the end of July! This is crazy! He has had back to back ear infections and respiratory issues off and on. Of course our last visit to the pedi led us to an ENT consult, which you may have guessed, is leading us to tubes. As of now, Noah is schedule for tubes and another ABR on Oct 22nd. This should be a very simple, easy, outpatient procedure for him and we will know once and for all, the extent of his hearing loss with the results of the ABR. In the middle of all this, Noah's g-j tube came out and we replaced it with a g-tube and he has been doing so well with it that we are not going to schedule for a g-j replacement. He is tolerating his overnight feeds and small boluses during the day. He is still eating great, of course, it's just not enough to sustain him. Weight is a constant issue, even with the feeding tube. BUT the important thing is that he is mastering the skills of chewing, eating, swallowing, texture, etc, etc, it's still volume and pain that holds him back.
Following in his brother's footsteps, Elliot has also been sick. He had a bad case of bronchiolitis that landed him with breathing tx and meds along with several ear infections, which is also leading him to tubes...blech. I am just hoping they will both be healthier when these are done. We are still waiting for a consult with ENT for Elliot before anything is scheduled.
We will be celebrating Zane's 11th birthday tomorrow!! He is so excited! The ole cliche, "Where does the time go?"....I can't believe it! I am so proud of him! He is growing up to be a young man still my baby boy!

Preschool

All summer we have been pumping Noah for school. We have read books, visited the school, shopped for supplies, and talked about it every night before bed, in preparation for the big day. In his IEP, they really wanted him to work up to riding the bus to and from school every day and work up to going 4 days a week from 8-11. We live walking distance from the school, and the ride there and home is less than 2 min, but they felt that it was going to be such an integral part of this whole experience for him to have the separation at home and the independence of doing this on his own. Anxiety is HUGE for Noah, especially with separation in situation that he does not feel 100% safe and in control. Even after weeks and weeks of feeding therapy, he still would never go to the treatment rooms w/o me even though he was totally confidant of what would happen in there. So, I spent weeks agonizing over this, thinking sure I would be taking him and dropping him off for weeks, if not months, until he worked his way up to wanting to ride the bus. My stomach was in knots thinking about how scared he would be and second guessing if it was right to put him through this. I was sure that I would be called daily because he needed to come home because he couldn't be consoled....
Then the big day was upon us...



The actual putting him on the bus part was quite ugly. Brian and I were an absolute wreck after doing it. I felt HORRIBLE...until about 5 min later when we got a call from his teacher saying he was at school safe and sound and was smiling? What?? Noah? Not only did he stay the entire day, but he has stayed every day since then(minus some sick days). I have never had to take him or come pick him up early. He LOVES the bus and school! We can't believe how well the transition has gone! We are so so proud of him!!

5th Grade!!!!

Seriously??


5th grade already? Last year of elementary school?



Don't you love the evil glare he's giving me because I told him I wanted a picture of him getting on the bus??



Don't worry, I promise I didn't follow him out...I took this picture from inside. I was also informed that I was not aloud to scan his baby pictures to be included into the post......sigh...fine.
Seriously though, I remember his first day of preschool and now he's in 5th grade...I remember the days he used to watch Woody Backpacker (Woody woodpecker) and when he would ask me to play in the Uncle Peter room (the computer room, ironically enough he does not have an Uncle Peter)....his favorite Sesame Street video (that happened to be in Spanish, I can still remember some of the songs!)....his blankie...his 3'tall Spiderman doll that he used to hide in the shower to scare me....his fist Halloween costume..(tigger, then Elmo, but my all-time favorite, the MiMi-made Buzz Lightyear..)...the first time I held him after 24 hours of labor and a c-section...(my babies like to be difficult)
OKAY I NEED TO STOP!!! sniffle, sniffle....it just happens so fast, right before your eyes! I'm so darn proud of him!

Home!

We've actually been home since last week, but I haven't really had much time to update the blog. We decided to pack it up and come home a little early because Noah wasn't feeling any better. He was having major pain in his groin area that we thought may have been a UTI since is was most concentrated in the morning and throughout the night (when he's hooked up to tube feeds). We did an urinalysis and culture in Evansville, but everything came back negative for infection. He has been on an antibiotic for weeks, so I am sure if there was infection it was masked by that. We got him into the pediatrician when we got home and his ear infections were raging once again and they found a swollen lymph node in his groin on the side where his g-j tube goes. His tube is going bad anyway, so it was on the list of things to be scheduled. The Dr is wondering if there is irritation from the g-j causing him this pain. We are scheduled to go to U of M for a consult next week. They will look at the tube and decide how to address the chronic tube infections (he has had several over the past year) and swollen lymph node and schedule a new tube placement. He seems to be feeling better, but the pain still comes and goes. In Evansville he wouldn't even walk or stand on his own due to pain, but he's definatly no where near that now. The ear infection is puzzling as well, he never complains that they bother him, and the Dr is wondering how many he has actually had, but we just didn't know it. We will follow up with him in a week and if it's still not clear, he will send us to the ENT.
As far as eating, he's really done pretty good since we got back. He still won't willingly eat if you set a plate down in front of him, but in the theraputic style mealtime, he is still getting in his 2oz of food and 2oz of liquid. He starts preschool on Monday so we are trying to push mealtimes around so we can still get in 4 a day and try to avoid any tube feedings while he is at school. I am just hoping we can get these ear and tube infections under control with minimal trips to the Dr as possible so he can just focus on school and being 3! This is going to be a great year for him!!