So, quinn did have an xray last week and it didnt show any changes. she still had air fluid levels in her, her liver was enlarged it was pushing her intestines out of place and her colon is so dilated it just looks hideous. ultimately it was my decision to send quinn home on tpn or not... or so that is how it appeared to me as the doctors who were on her team felt that either road was not going to be easy. i just wanted her home and so i told the new gi doc that i wanted her home on tpn but they felt that despite her bad xrays, things were moving in the right direction. she finally was producing bowel sounds and we were going to try a new bowel regimen and formula concoction. plus they upped all her meds and they just wanted tosee how things went before they said that she was a lost cause. I sincerely thought ti would be an epic failure. I was mad and upset. i knew halloween was coming up. quinn hasnt had a quality of life the past three months. she lost so much weight and her health had been rapidly declining. i thought that since her xray was STILL crappy, there was no way she would tolerate feesd without some major discomfort. i just wanted to take my baby home instead of trying feeds, torturing her, deeming it a failure and then having to spend halloween in the hospital anyway because we wouldnt be able to get tpn over the weekend. i wanted quinn to have a break and i would have been more than happy to try feeds at a later date, when her xray looked better. well, doc still wanted to try her on feeds and i was not happy about it. my only real experience with doctors slowly titrating feeds up was with loma linda, and all they do is get her up to her goal and send her home all the while making me feel like i was just taking up space in the hospital, which was exactly how i expected to be treated here. loma linda always sent her home without making sure that they knew that she was definitely tolerating her feeds. well, apparently chla is different, than heavens.
not only do they communicate well, they also continuously communicate with the nurses also! so they are constantly updated on how quinn is doing. after an entire week of being completely hesitant, pessimistic, apprehensive, nervous, anxious and frustrated, quinn very slowly tolerated her feeds! i was surprised, pleasantly of course! quinn is on a new formula with some additives. it is specialized for her and it has been working. quinn reached her goal of 38ml/hr this weekend. unfortunately, even 40ml/hr is not optimal hydration for her. they want her at a rate of 50ml/hr, and so far our attempts to increase her rate has failed. but we arent going to stop trying. i am so glad that the last gi doctor pushed for me to do gi feeds. yes, we have been here a long time and i just want to go home, but as our lovely gi doctor put it... 1 slow step forward is better than a fast step backwards. we still dont know surely if things will continue to go so well, but iwas told today taht she is definitely closer to going home. quinn also looks so much healthier,she has a lot more energy and is awake for most of the day, so the formula isnt even making her feel miserable.
i really, really thought this was the end of the road, at least for now. i thought we had no other choice and that quinn needed to go home on tpn. even the hospitalists felt that feeding a gut like that wasnt a good idea, but quinn has surprised us all. her xray was bad... definitely really bad.... but she did it! shes amazing!!! i am so glad she doesnt need tpn or ppn right now. i am so happy that this team is taking her issues seriously and are really making sure she is definitely tolerating it. it does suck that we have to be in for so long, but this is definitely necessary as quinn was deteriorating rapidly. here, if she needs something, she gets it right away.
quinn was cinderella today. she felt really special. she walked around adn visited kimberlin (a friend of ours who is also in the hospital and also has mitochondrial disease). she got a bag of goodies and the nurses are wonderful. quinn gets plenty of toys and attention here.
things are going well and whenw e are finally discharged, i will be at peace, knowing that we did everything at quinns pace, even if it is going home on fluids or ppn or a new tube, whatever the outcome may be, i am grateful that they are taking quinns issues so seriously here and are moving at a good pace for quinn.
1 comment:
Sometimes change is good, a new environment can bring new positives. My daugher Sophie received all of her therapies at a facility until this past June when her doctors decided it was best for her to switch to homebound therapy. Sophie has been a very sickly child and her compromised immune system makes exposure so dangerous. So far at home we have had a dramatic reduction in infections.
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