Her chylo-thorax continues, so she is off all food. She is back on TPN (food in a bag). She didn’t like her vent (that is a ventilator, Cyndi – sorry I wasn’t clear) settings, so they are higher. Her NO (nitric oxide) is back up to 5. She is off versed, and on morphine and atavan.
For those who have been here, done that (Cammie, Heather, any others) – I know each kid is different – but I need some parameters here. How long were y’all on the vent? How long till you were home (that mystical place we dream about)? For reference, tomorrow is one week post-op and our pressures were 7 (moderate PH) and a transitional AV Canal. She is 4 months old and been home 11 days. update: I asked one of the cardiology fellows and his prediction is another week up here in ICU.
To be positive, I love watching her breathe. I love watching her chest rise and fall. Slowly, easily, with no retractions. She is breathing at 32 breathes a minute - how beautiful! A month ago it was 80-120 a minute. She no longer looks like she just finished running a marathon. Granted a machine is breathing for her, but it is a beautiful sight to watch her chest.
Volunteers brought her the cutest blanket. It’s so cute. I am grateful for all of these wonderful people who donate to Texas Children’s Hospital and the Ronald McDonald House. These are such blessings to those of us here at the hospital.
Hi Shelly, This is Joyce. Sarah and I have been following your sweet baby girls story. I know it is so frustrating when you see a little progress and then machines get turned back on, O2 levels are increased, and the TPN is back hanging on a pole.
I can share that our Sarah had a rather lengthy stay after her surgery, several months actually. That was 19 years ago, which seems like just yesterday. As much as we have seen medical advances over the years, somethings stay the same. It seems that each baby comes out of his/her surgery on their own time.
Our family learned pretty early on that you just take one day at a time. The medical professionals will do what they can, but Arabella and her higher power are in control. Our thoughts are with you and your family as you navigate these tough days.
I will give you all of the input I can. Addy was still with her birth parents during her 4 month hospital stay. However, she did have PH when we brought her home. She was on O2 24/7 and required breathing treatments every four hours. She was on Lasix and Sildenafil twice a day. She had a PDA closure before we got her at the age of 3 months. She was needing O2 less and less and her pressures were constantly improving. Her total time she was diagnosed as having PH was 20 months. She still has lung issues, when she gets sick, she gets really sick and requires O2 and breathing treatments. You would never know when she is healthy that she has chronic lung disease, no wheezing or trouble breathing at all. I so wish I could come and give you a break! It is hard being away from your other family. My suggestions: accept all of the help that is offered, take time away from the hospital when you can, she's going to be fine and well taken care off, spend time at home and with your other kids for normalcy, and rest as much as you can! Prayers to you and your angel, she is beautiful!
I guess I must second and third Joyce and Cammie.Waiting is difficult and comparing is even harder.Now you said Arabella has a transitional AV.I am going to have to look that up as I am not familiar with that.Zoey had AV complete with mild to moderate PH.She weaning her off NO was tricky but eventually we got there.Zoey had a hard time when they went to extubate.Some of these little ones do.Low muscle tone lent itself to upper airway restriction and we had a godsend of a RT who used epi and decadron and made all the difference to not have her reintubated.Please TRY and take a breath.Think of all her little body has been through and it hasn't been a week yet and do take help and rest .. please.There are alot sweeties out there that need the oxygen for a bit later s well as RSV shots in winter and other precautionary things all for their lungs but most out grow the heavy reliance on it.Prayers to the sweet girls.So true ... your post title but I promise,one day soon,just when you least expect it she will take many steps forward.Promise.
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