When we got here yesterday they asked me if we wanted to go back to G.R. next week. I got excited and said, "Of course!" Then they added, "To Spectrum Hospital." I still was interested! So, hopefully early next week they are going to try to get Gavin transfered. They said that they knew we were anxious to get home and that it could take another 2-3 weeks to get Gavin comfortable enough on the withdrawl meds, so....I think it's a good idea because the family can be more together, but I'm a little concerned that he won't get continuation of care. Each hospital does things differently and I hope that they don't change his meds and cause delay in getting home. Of course, maybe they have a faster method, who knows? I'm excited about the news and anxious to get moving! They might wait until Wednesday after his swallow study. They couldn't fit him in until Tuesday morning. Unfortunately, they don't want him to be bottle fed anymore until they know that he's not aspirating the formula into his lungs. He's not happy about this! Now that he got the hang of sucking again, he really wants to do it. He's always trying to suck on his fingers and hand and not too happy with just that! The pacifier does O.K. for awhile, but it's still not what he wants! Poor little guy!
Gavin is a little fussy today after a few changes on his meds and his lungs are a little guncky, otherwise he's doing well. Although, they are going to give him more blood because his hematocrit is low. They say it could be caused by all the blood draws that they do on him. Gavin had O.T. today and she said she's happy with his progress. It's slow, but he's moving ahead. He sure does get worn out with therapy though!
Michal is doing well. He may be off the oxygen for good if his oxygen saturation stays high enough and his swallow study showed that everything seemed normal. He just has to be able to stop vomiting and keep enough feedings down, then he can go home!
Cody was sent home under hospice care. They were gone when Nolan and I arrived yesterday. I was worried when I saw his bed empty, but his mom left a note for me with her phone number, so I'll probably call her soon to see how things are going.
Please continue praying for "the boys." We appreciate it! Have a great day!
Love, Alicia
Nolan says Hi and that he's having fun!
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