Monday, October 11, 2010

Trying to find where we are

I may start talking in circles here, but things have been pretty hectic and confusing.

Nothing grew from her cultures, the fever subsided and antibiotics discontinued. A follow up CBC/CRP (because I begged) this morning still looks good.

Natalie started to do better Friday afternoon and overnight. In the morning she was down to 56% O2. They made a vent change (moving her to pressure control/pressure) and her O2 went up by 10%. A short bit later, another nurse was babysitting and Natalie had an event. She spit up, pooped and desatted down to 19%. That is AWFUL. The rest of the weekend was just as bad. Steve was with her until 3AM Sunday morning when she finally stabilized. She was "ok" until Sunday afternoon when things fell apart again. This time an X-ray showed her ND tube in her stomach rather than her intestines, so they attributed her event to that.

She is still not bouncing back. The new talk is that she may be microaspirating gastric juices. The surgeon came by last night and suggested we change course. Rather than G tube/nissen, which would be a pretty big hit for her recovery wise, he suggested a G-tube to drain gastric juices and a J-tube for feeding. The J-tube would go directly into her intestines.

Here's the problem....if her respiratory status is due to microaspirating and that can only be addressed surgically she has to be in a better place with her respiratory status before she can go for surgery. it is yet another awful catch-22.

As for the trach, the neonatologist thought a cuffed trach was worth a try. We are hoping that controlling her air leak will help matters greatly. There is an added bonus that it may help protect her airway if she is aspirating. It was a funny-this weekend while I was in panic mode people kept saying "Have you heard we are going to try a cuffed trach? It will be here next week and maybe that will help." Have I heard? Yes. I was the one who researched the trach and asked for it. Seriously. It is amusing that anytime we have a good suggestion the team immediately forgets where it came from.

So, this is where we are. I am desperate for this trach to arrive and hoping it will make some positive improvements. I hate where we are right now. This weekend was the worst kind of fear.


  1. Oh JT, I assumed you were under some major stress since we haven't heard from you. I hope the trach gets there asap!

    Bethany Knight

  2. JT - I'm sorry to hear about your awful weekend!! I hope they can remedy the isseus with the trach so Nat can regain the levels she had before.


  3. I hope it will be better. Grettings from Poland and 100000 kisses for Natalie :*

  4. My name is Melinda and I have 3 children. My youngest, Noah, is 13 months old. He has Congenital Central Hypoventilation Syndrome. This is a condition where he does not breathe deeply enough while sleeping and if not properly ventilated, the CO2 will buildup in his body and cause seizures. Thus, he is on a ventilator and has a trach. We monitor his oxygen levels daily and also his CO2 levels. I haven't read through all of your posts so I am not sure what your daughter's diagnosis is. Noah spent 4 long months in the hospital. He has been home for 1o months now and we provide all of his care with no nurses. We do trach changes every week, trach care daily and change the circuits on the vent weekly. I know how scary the ventilator and trach are. We were so glad to see Noah with the trach, he was much more comfortable with that rather than being intubated down his throat. We have to keep his CO2 levels between 25-55 and his O2 above 92. I am so sorry you are having to go through this. I know how hard it is seeing your baby with all those tubes and machines and having to juggle another child at home while your other child is in the hospital. Not sure if your daughter will have to go home on a vent but if she does, it is difficult but manageable. Trach care is scary at first but then it just becomes routine and you can do it in your sleep. Noah did have a g tube at one point but eventually pulled it out and we didnt replace it because he didnt need it. Seems like you are dealing with some of the same issues we have dealt with. Please don't hesitate to email me if you would like to talk. I understand what you are going through. My prayers are with you, your family, and your sweet baby.

  5. Dear Jen and Steve,
    We are so sorry to hear that Natters (and you) have had such a difficult week. Looking forward to good news with the arrival and placement of the CT. Please let us know what we can do.

  6. I am sorry to hear about her awful weekend. Praying for you!

  7. Thoughts and prayers are with you.

  8. Jenn, I honestly don't know what to say. Just wish there was something I could do for you - take Annie to ballet, bring you dinner... Any chance you're a marathon runner? You have the endurance of a saint.

    Praying for you and Timmy's birthday buddy all the time! Can't they overnight a trach? Come on now people... (Curious, what size trach does Natalie have? I know our NICU neighbor had to have a customized Bivona. Not sure why...)

    Hugs! And warm Arizona sunshine to brighten your day!