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.

Sunday, August 28, 2011

Recovery Day 3

We woke up at the bum crack of dawn to a nurse needing blood. One of the bad things about being moved to the floor you have to be poked to get blood taken instead of having it drawn from an existing line. Anyway the nurse could not get it after two failed attempts he said he would send in another in an hour so Gator could rest from the stress. We slept for a while till the next phlabotimist could come, she was fast and got blood the first draw. We snoozed for a little longer then went down for a X-ray. We came and snoozed until the doctors rounded. I nearly fell out of bed when they told me they wanted to send Gator home. WHAT THE? I started to stress out bad now and it was only 8 a.m. Daddy came up, Gator had breakfast, then we headed to church at the PCMC branch. I love the meetings, 30 minutes!!!!! Finally we came back for lunch and a nap. We woke to our home teacher and his wife for a visit! Gator had some awesome therapy on a pedal tractor. He drove it all the way down to the elevator where we road it down to see Auntie Lisa, Uncle Marc, Arli, Wells, and Ry Ry. We went to the hospital play room together then came back for dinner. We finally chatted with the NP about our stressed feelings. She is on board with us taking one more precautionary night in the hospital. So we most likely will be discharged tomorrow. This is completely different than our track record, making me totally scared that we will have a back slide. There are a few things that worry me. #1 he has a bump at the top of his incision. #2 his sats have dipped until we raise his oxygen to 1 liter. #3 he has complained the most that he doesn't feel good. Anyway just one more night and I am sure I will feel better all together. Thank you so much for the prayers, I have a testimony that those prayers are being answered I can see it manifest in my son and myself. Our whole family has been watched over. Thank you thank you! We feel the comforter so close when we are here watching others in their trials while we try to endure ours. We are better because of all of this.


Kyle and Alli said...

Yikes. They sent us home on day 8 and I still thought (now looking back on our first 4 days of home life) that we probably should have kept him there for at least another two. Home life was NOT fun and that is saying something since our hospital time was pretty awful too. Maybe if Gator is already communicating so well and able to know his limits, home would be good for him, but I am with you... keep him there!! I think that the surgical team thinks that post Fontan kids are tricky enough, just sent them home since they will likely be back anyways!! Sheesh! They don't worry about you as much as parents since they know that you have raised him thus far and know the drill with meds and oxygen, so they want you out of there. I am so glad to hear that he has been holding steady and is actually sleeping well at the hospital (that was our huge problem. They sent Grant home because he wasn't sleeping and was so anxious that his blood pressure was out of whack due to his stress!) Keep advocating for you concerns and at least make sure that they have a solid discharge plan in place including xrays a few days out from discharge! Hugs!!


p.s. I am very jealous of 30 minute church. Everytime our church starts to get a little long, I think fondly to 30 minute church at the hospital, and then I stop and be grateful that we are healthy and not at the hospital!! :)

likeschocolate said...

Wow! Things must be going really well or they wouldn't want to send him home. Truly amazing! I remember after romans surgery how quick he recovered and was shocked at how soon they sent us home.

berrymom said...

I check your blog several times a day and read every word twice. I just never know what to say. I love you. We all love you. We are praying for you. Thank you for sharing your experience and feelings.

Amy Bennett said...

WOW. Gator is so amazing! I have been following all of your updates, but am only now just replying! I've never heard of a Fontan going that smoothly. GO GATOR!!! It gives me so much hope for our Fontan! Good luck with discharge and hope you're home SOON!!!

Karen Groesbeck said...

Going home...Wonderful and scary! Our prayers are with you that you will be strengthened and comforted. You are our heroes!

Gibson family said...

Clint got called off on he didn't have a chance to see you and had a meeting at PCMC today and just barely missed you guys. Hope all is well at home. If you need anything don't hesitate to call. We have a little something for Gator that I would like to drop by sometime. Take care! :)