Well, let's start with the good news, shall we?
Isaak's transfusions helped him tremendously. His skin tone became nice and pink again. His breathing improved. His temperature and its regulation also improved. And his blood tests? They grew nothing - no bacteria and no fungus. CRP levels dropped. So they've stopped the antibiotics, antifungal and caffeine. He is on heated and humidified oxygen (at 21% or room air concentrations) at a flow rate of 1 lpm. (As Neil would say, Isaak likes the "wall juice.") He also ditched the isolette (again).
Penny remains sans respiratory support. And it is SO much easier to get her out of the crib. She has occasional desats but usually recovers quickly on her own. A few times she's been given blow-by oxygen (another phrase we learned with Ollie and had hoped never to use again.) They've slowly gotten her back to full feeds (about 45ml) - her first full feed will be given tonight at 11pm. And we've been working on breastfeeding. Each time she does better than the last time. It's not an exact science figuring out how much she's gotten, but we're fairly certain that she got about 40ml when she nursed at 5:30pm today. On the whole, though, she's doing really well.
Isaak's surgery is Tuesday. While we're excited that he's going to get reconnected, it's scary to think of him going under the knife...again. Before Isaak was back-transferred to WakeMed, the surgeon mentioned that we should think about having a g-tube put in at the same time as the reconnect. With a g-tube, Isaak could get continuous feeds overnight. (Gee, there are a couple more phrases we'd hoped to never use again.) The goal of doing continuous feeds is to maximize the adaptation of the bowels.
In preparation for his surgery date, Isaak will be transferred to UNC on Sunday. And, if there is space available, Penny will, too. We are very sad to leave our ICN family at WakeMed. This was a hard decision, but things will be stressful enough without the added stress of children in different hospitals.
Speaking of hard decisions and stressful situations...
It's coming. Ollie's first angel anniversary on August 3rd and what would have been his second birthday, August 5th. Neil and I have both been talking about where we were this time last year. July 4th of last year we were at the ER with Oliver and I had just broken both elbows. July 7th, 8th and 9th of last year we decided (again) that bipap was not for us and left the PICU at Duke. July 19th of last year we made our last trip to the ER with Ollie - we knew our time with him was growing very short. And August 3rd of last year...he was gone.
We love you, Ollie Bear! And we still miss you terribly.
Friday, July 9, 2010
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I was looking at Ollie photos this past week.. and the week before... and the week before that. He was so happy, so good, so patient, so bright, so loving. I miss his face, his smile, his smell, his nakedness. :) I think about what an amazing big brother he would have been... so proud, so protective. This date has been on my mind for so many months now... August 3rd. It is weird to think that my greatest hope is that it will be bittersweet. I hope that you will have Penny at home, in your loving arms. I hope that Isaak will be preparing to come home to the crib of his siblings, and that he will find rest there. But I know that Penny and Isaak being here will never lessen the loss of Ollie. We miss you Ollie Bear.
ReplyDeleteYes, Grant and I have also had Ollie on our minds almost continuously. We were with you guys on July 4th when Oliver was rushed to the hospital. We also knew that our time with him was growing short. We were also with you guys the other times he was rushed to the ER. It was so very hard watching Oliver trying so heard to breathe but yet at the same time, he would flash that big wonderful "OLLIE SMILE" that we all had come to love and know so well. The last time we were in the ER with him, Papaw had taught him to wave bye-bye earlier in the day. When we left to get Mommy and Daddy something to eat, we waved to Ollie and told him we would be back in just a little while. I'll never forget the moment he held up his little hand and waved "bye-bye" to us and flashed us that wonderful grin! When we were in Baltimore last week, we saw pictures that Auntie Amanda and Uncle Philip took of Ollie...pictures we've never seen before. It was as if he was saying, "Don't forget how cute I was!" Yes, August 3rd and 5th will be bittersweet. We're thankful for what time we had with Ollie on this earth and we miss him terribly. The one hope we hold on to is that one day we'll see Ollie again and he will be totally free of the SMA and the restrictions it placed on him while he was here on earth. We're so very thankful for Penny and Isaak and we look forward to them coming home and sleeping in their big brother's crib where Ollie Bear will continue to watch over them.
ReplyDeleteNeil, Bekka, Ollie, Penny and Isaak, we love you all so very much!!
Papaw Grant and Nana Pam
Thanks for the update. Glad to hear things are lining up on the positive side for the plans for Isaak and his necassary surgery even though I can understand the mixed feelings. Our thoughts and prayers continue to be with you as you make the move to UNC and trust that it will go smoothly for both of them to tranfer together. Love ya, Mom & POP Milloway P.S. Please Check your gmail for a private note from me.
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