Well, my little HK is holding her own!! She's off the oxygen, which was a huge milestone!!
Since Harper Kate had the stomach bug last Saturday, she hasn't eaten anything. Usually while you are in the hospital they avoid food for a couple days and just give IV fluids. Well, when we started adding back feeds, HK couldn't tolerate hers. So, to give her some nutrition we added in the PICC line and she's been on that ever since.
Today we started back feeds of just pedialyte at 5 cc's an hour. Her normal rate is 50. We will see how she does with that and over the next day or two, we will work our way SLOWLY up to 50 cc's of pedialyte, THEN move to formula. Oh, the patience of these GI doctors to work up so carefully just amazes me!! A little sarcasm for your day....
Pneumonia wise Harper Kate is better. She is still receiving IV antibiotics and will continue probably until Tuesday. We will be owners of a nebulizer machine, and inhaler of steroids and a deep suction machine (for extreme mucus days) when we leave here thanks to the pulmonary doctors. We will also be following up with ENT and Craniofacial specialists, so let's just add three more doctors visits to my list of checkups. I mean, I don't have anything better to do. :).
Ok, I know I sound sarcastic but all of these things are really meant to help my sweet girl. For those of you who personally know her, she always sounds very congested when she breathes. Well, while we have been here we have found out that HK has a very narrow airway which probably doesn't help her swallowing or breathing or coughing up mucus. So the ENT DR will do an evaluation and see if it would be worth removing tonsils and atenoids to give her some more room.
HK also has a chin that goes inward. When the pulmonary doctor moved her jaw forward her breathing was so much clearer! The craniofacial Drs. will evaluate if plastic surgery, that would move her jaw forward, could be helpful. So, you can see that all of these things could really benefit our angel girl!
The HUGE negatives of being here for so long is that HK isn't getting her therapy which she needs DESPERATELY! Please please pray that she will not regress too much in the progress she has made! She has already developed a hyper gag reflux (which she didn't have before), due to the deep suctioning. Please pray that gag disappears so she will not despise eating tastes by mouth when we resume.
Also, please pray for HK to tolerate her feeds perfectly, faster than they expect!
Thank you all so much for your prayers and concern about our child. Your love and prayers sustain us during long days up here in the hospital.
Enjoy some pics from our stay. One is HK when she first got here on oxygen, one is HK having some tummy time, one is my lovely bed that I make every night and undo every morning, one is Harper Kate not being the most ladylike little girl I've ever seen and one is HK off oxygen finally!! YEA!
Love you all,