Alli Update and G-tube Surgery

Tuesday, July 5, 2011

After 167 days and counting it appears that we are headed for the g-tube.  For those that have no clue what I'm talking about the g-tube, or gastrostomy tube, is a tube that is placed directly into the stomach for long term administration of food, fluids, and medications. Up until now she has had the OG, OJ, or the NG.  The three I just mentioned go either in her mouth or her nose.  Her current feeding tube, the NG, goes in her nose and directly into her stomach.  She HATES it!!  She pulls it out at least once or twice daily and constantly has to be re-taped due to moisture and just the fact that she messes with it!!  Did I mention she's a little firecracker!??  She HAS to have a feeding tube to go home UNLESS she is taking all her bottles.  Although she has proved that she CAN eat and LOVES to eat she just doesn't have the endurance and needs more time to grow new lung tissue and get healthy.  You ask why she's not home yet since she weighs almost 8 lbs!?? 

Here are basically the 3 things we have to accomplish before we are able to come home:
1) Maintain body temperature in an open crib-CHECK (she accomplished this a long time ago)
2) Be off oxygen or be on an amount that she could go home on-generally less than 1 liter low flow We're not there yet, but she has been there and was able to hold her own until her nose became  all dried out
3) Be taking all of her bottles OR in our case the g-tube

In our case, with two older girls at home, the g-tube is the best case scenario in the "long run."  If Alli Grace were an only child I have no doubts that I would be capable of handling the NG at home, but she's not.  Besides the fact that I have a curious 2 year old Alli pulls her feeding tube out and at any point she could aspirate.  This is by no means good for her lungs....ANY slight infection is detrimental to Alli because her lungs and system are so compromised.  The g-tube would allow us to SAFELY feed her without risk of her aspirating.  The good news is that we know she can and loves to eat so we would still be able to work on bottle feedings at home and continue feeding her solids which she has already taken to and is doing pretty well!! 

So what's the hold up and why am I rambling!??
It's surgery!!  Although it's a safe surgery, it's done everyday, and it's relatively a fast procedure it's a whole different ballgame when you have a baby withe severe chronic lung disease like Alli's.  It would require Alli to be put to sleep and back on the ventilator.  It took us 9 weeks to get her off the vent and that's considered a terribly long time by preemie standards!!  Everyone is pretty sure that she would do fine during the surgery, coming off the vent is a different story and a concerne for everyone.  SO, the new deal could possibly find us being transferred to Vanderbilt where they could potentially do an upper spinal and give her versed to relax and sleep!!  This would put a big CHECK by her feeding and get her home so we can safely work on feedings at home, in a more consistent and controlled environment!! 

We would then be left with her breathing and on Wednesday she comes off her 6 week nitric oxide and high flow cannula treatment to hopefully "remodel" her lungs.  She will then be placed on Vapotherm, a form of high humidity and high flow.  Alli needs a slight "PEEP" effect on her  breathing which is basically just a little pressure to keep her lungs inflated.  In the past babies like Alli that were needing long term oxygen and the "peep" effect would have to either stay in the hospital on a high flow oxygen cannula or have a tracheotomy.  To be honest the tracheotomy is a fear of mine because her lungs are so bad!  We have our first consult with the pulmonolgist from Children's sometime this week and we'll see what he says.  It's not possible for Alli to come home on the high flow cannula she's currently on, but the Vapotherm is a very big potential!! 

So long story short....we're still getting there!!  We love your prayers for our sweet girl especially as this process continues to drag on!!  Please pray with us that we can get the g-tube placed without putting her to sleep and back on the vent and that the new Vapotherm will be the answer she needs for her breathing and allow her to come home where she belongs!!

1 comment

  1. Jackie - I totally understand going with the g-tube. I think it will make your life easier. Caring for your other children is absolutely a valid consideration.

    I know being off oxygen is a must, but the truth is LOTS of micro-premmies go home with oxygen. If it comes down to that being the only reason she is still in the hospital, you can probably argue the case to send her home with oxygen.

    I am so in awe of how Alli is doing. I am also so grateful for you that you have such an amazing support system. God has blessed you so richly.

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