Monday, July 25, 2011

New Beginnings

I haven't updated about Desi's surgery in a while. When we last checked in on the blog Desmond was scheduled to go under the knife on August 10.

It was finally getting so close and then I got a phone call from one of the nurses at UMC telling me that they were sorry to tell me that Dr. Angel, the pediatric plastic surgeon, is no longer with them and therefore they can't do it anymore.

Needless to say I was completely devastated. Dr. Angel was the only plastic surgeon in the state that could do the surgery and so far MS Medicaid has been paying for everything. So going to Dallas like they recommended was pretty much out of the question.

Thankfully, Desi's pediatrician, the wonderful Dr. Sluis, recommended I look into the New Orleans Children's Hospital. I didn't know, but they have a cleft lip and palate and craniofacial clinic. They are also MS Medicaid providers! I gave them a call last Monday. They were in clinic that day, which they only have once a month for Desi's age group. So the nurse took a message and said the coordinator would call me back the next day.

The coordinator, a really nice woman named Mary Ellen called on Tuesday. I explained everything we had been through and that we we're basically hospital homeless. She squeezed us in the little baby clinic on the following Monday. If she hadn't been able to do that we would have had to wait until September for the next clinic with a MS Medicaid provider doctor.

So last Sunday we headed down to New Orleans for the weekend. We stopped in Magee first to see the Browns and go to church with them. We had a nice visit and Desi got to meet more of his extended family. We stayed for lunch and Desi ate his weight in some delicious greens that Rhonda cooked.

Afterward, we headed on down to Metairie and stayed with my aunts Nancy and Jess and their grandkids Loraine and Gio. Desi really enjoyed playing with his cousins and took a liking to Nancy.

Monday we went into the city and hung out with my friend, Sammie, her giant son Spencer and her nephew Mani. We ate some awesome shrimp po-boys and then Desi and I headed back to Nancy's house so he could get a good nap before his appointment at the children's hospital. It was pouring down rain like nothing I have ever seen in Vicksburg. I had forgotten it could rain like that.

So I continue to Nancy's house despite her warning that her street floods during a hard rain. Desi was already asleep and how bad could it really be, right? I get to her house and put him in the bed. Ten minutes later I look out the window to see water covering the street in front of the house. I knew if I didn't leave then we would be stuck in the house and miss the appointment we had driven all this way for. I loaded Desi back I to the car in the pouring rain. He was such a trooper and stayed asleep through all of this. As we left the neighborhood I drove through the highest water I have ever had to before. I drove past garbage cans floating down the street and almost stalled out more than once. We got out of the neighborhood and ended up in crazy traffic on Jefferson Highway. It was a good thing we left when we did be wise we ended up getting there right on time.

At the appointment, which we didn't have to wait forever for, we got to meet the very kind Mary Ellen, the neurosurgeon, Dr. McBride, and the plastic surgeon, Dr. Hilaire. They all came and sat in the exam room with us and answered ALL of my questions. I was afraid that since it was an appointment late in the day that we would be rushed through it all but it was not so. They took their time and let me take mine.

The best news of all is that they are going to do the surgery and it's a different procedure than they had been planning on doing at UMC. In Jackson, they were going to basically remove parts of Desi's skull that have been misshapen by the growth of his brain in the wrong directions and reshape them. They would then put them back together in his head using plates and screws. The surgery would have lasted about 6.5 hours and he would have spent at least one day in the ICU and a total of about a week in the hospital.

The surgery they proposed doing at New Orleans Children's Hospital is a lot less intense. It would not involve any hardware. Dr. McBride and Dr. Hilaire said they would simply go in and remove the suture that has prematurely closed and then some strips along the sides of his head as well. They said that would be about it and that from there nature will do the rest. Desmond's brain will have room to grow the way it is supposed to and his skull will reshape with that growth. This surgery will only take about 1.5 hours, he may not even have to go to the ICU and he will only be in the hospital for three or four days. They said they have had a 100 percent success rate with this surgery and that none of their patients have had to have second surgeries. Can you say impressed!!!!

I can't tell you how relieved I am after all of the mess we've been through I feel like this is where we should have been from the very beginning. They are very busy, but they said they would fit his surgery in in the next few weeks. The only bad part of the visit to the hospital was that Desi had to have blood drawn to determine his blood type. Since he was born at home, we never had the blood work done that they normally do from the cord blood. It took them five times of inserting the needle to finally get a vein. The poor boy was beside himself and I felt so bad for holding him down. But, it was all for good, because now we know that he is A+ and so am I. I know that the blood at the blood bank is just as good as my own, but I feel better knowing that he is getting my blood if he needs a blood transfusion.

Overall, it was a fantastic weekend. We finished out our trip to the Big Easy with some beignets and a Café Au Lait at Cafe Du Monde. Well, Desi didn't have any, but he enjoyed the atmosphere!

Then we strolled through the market and bought a souvenir to commemorate the trip. Don't think I'm crazy for buying a voodoo skull for Desi, he picked it out himself. I thought it was rather appropriate too since we were there because of his skull.

When we finally got home we stopped in to see Grady and had a wonderful visit with Lauchlin and Olivia. I really feel so lucky to have such wonderful friends in mine and Desi's life over the last year. I hope I can be as much help and support to them as they have been to us.

Can you tell I'm sappy and happy?

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