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Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Saturday, January 26, 2008

too busy!!!

Yesterday was a busy day. We came home.. The hardest part is all the organizing that goes into going home. As far as the hospital went, Alex needed an echo, to remove his ng tube and to have is picc line removed, this all done before we could leave... Then for home I needed to make follow up cardiology appointments, home health has to be organized three different ways: oxygen, Lovenox injections from the pharmacy, and the nurse who visits to weigh, and assess Alex.. Then there is the pediatrician and the developmental specialist.. I needed to coordinate Ry coming home.. Thanks mom for bringing her and lunch, I am sure we just would have skipped that..We love being here and don't mind the work...We are all trying to adjust to one another again... Ry has had such one on one fun with grandparents and wants a lot of attention from mommy and daddy....Alex has been pretty vocal about not feeling good and to his change. He is used to having nurses come in for vitals and wake him or poke him..We are working on understanding him again and doing things without the help of the nurses... When we were at the hospital I could just leave and take a break... Now I have to wait for help (or hold it)....We are confident we will all adjust to home life soon. Alex didn't have to come home on as many meds as before (only about 5 this time), he is still on Oxygen because of the pulmonary hypertension...They will be watching him closely to make sure he is gaining weight.. He lost weight in the hospital and we were going to come home with a feeding tube for continuous night feeds but, then it was decided that he might eat better when he is at home... so we got to take it out. If he doesn't gain weight this weekend then our pediatrician can make the call. He also hasn't had fevers in a couple of days and maybe they really were coming from his ear infection, so we were able to get rid of his picc too. His Echo looked a lot better and now that little load of laundry looks more like, just a shirt in there.. "Shrinkage" in this case is good.HEHEHE....
Thanks for all the prayers to get us here..Brynn

8 comments:

Kaidence's Mommy said...

YEA!!!! WE are so happy that you are all home. I know how much work it is. I am still trying to organize everything and deliver dishes and thank you's ............My biggest problem is knowing what to do with all of the "stuff" we collected at the hospital. Good Luck. We are so happy that you are home at last. Us mommy's love to have our kiddo's all in the same place at night. We love you!

With Hope and Love,
Shauntelle
Kaidence's mommy

Mike and Rebecca said...

Thats great that your home...you sound so worn out, try and get some sleep, I always loved having Brinley home after the hospital with us but thats where the real work begins and the true recovery continues...we always had a spread sheet going to keep all the meds and times straight. If you need anything let us know. Were still praying for Alex!!!

Hugs,
Mike & Family (IHH)

Tiffany Snow said...

Brynn, I am Michele's sister-in-law and I read your blog every day. I am so happy you got to come home... we are really pulling for Alex and a speedy recovery. Thanks for all the help and support you have given to Michele, it has made all the difference having a "real life" person to talk to. Good luck adjusting and we'll keep you in our thoughts!
Tiffany

Jennifer said...

Hurray for your little fighter! Please send Rylie to play with us any day any time. Please let me come over and hold Alex if you need a nap or a break. Please let me bring you dinner Monday. I will call you. You all are in our thoughts and prayers.

Anonymous said...

So glad you're home together! We'll continue to pray for you!

Hugs,
Joni

Mindurs said...

Yea WELCOME HOME! I am glad to hear that ALex has been released from the hospital. I hope your transition home goes will. Let me know if you need anything. It will be probably be mid-February before we rid our home of all sickness, but by then I will be happy to do anything!

Kenny & Michele Kingsford Family said...

I'm so glad that you are home and no longer sleeping on those fun "beds" at the hospital! Too bad you couldn't sneak a nurse home in your diaper bag so that you could get some much needed rest. I hope Alex adjusts to home life quickly and continues a speedy recovery. Loved the photos - what a cutie!! We'll keep you in our prayers!

Michele

Andrea said...

I'm so glad you are home and Alex is doing well. We'll still pray for you. You are such a wonderful family full of love. Thanks for your great example and for sharing your Alex with all of us-we have all been touched by him. It was good to have Ryleigh in primary today.