Jaime Update 5-12-09

First, a shout out goes to my little cousin Kristen: Happy Birthday!!!! :-)

I'd really like to tell everyone that Jaime is doing awesome and having a GREAT day, but unfortunately that is not the case at all!
He's had an eventful day...and not in a good way. He had to be bagged over night, his heart rate dropped into the 50's. This actually happened a few times, but only once required bagging. When we came in this morning, Sheri (Jaime's nurse) said that he had been guarding his tummy area and was clearly in pain. He was not tolerating anyone touching him, even noise bothered him. His hands were in fists and his legs were scrunched up toward his tummy (they still are). She gave him Morphine and Versed multiple times, as one extra dose clearly wasn't enough. He was very tense all over and his blood pressure, sats, temperature and heart rate were all over the place. He was very cold and pale. His incision area was more swollen and his chest x-ray indicated that fluid had accumulated, (a 2nd x-ray was done and wasn't any different from the 1st in the way of fluid accumulation, thank goodness). His labs were all off and his bleeding time was critically high. There is a big long explanation for the increased bleeding time, but I don't want to get into it, just know that it is not a good thing, especially for a hemophiliac.
So having said all of this: the plan is to increase his pain meds, check him for an infection in his blood, sputum and urine, put him on 2 new antibiotics, give him Lasix, have him lay under the warmer, transfuse blood, have another x-ray, additional labs and watch him like a hawk.
I spent the entire day by Jaime's side. Pastor Eric stopped by for a visit, too. He actually sat with me for a few hours this afternoon while Tom got Jared from school and took him to the park so he didn't have to be at the hospital all day with Jaime so ill. It was great having the company and Jaime had a special blessing from Pastor Eric, too. Thanks Eric for spending the afternoon with me!
Though I spent the entire day up there, each time I left Jaime's room (to pump, go to the bathroom, lunch, dinner) the drs. came in (of course)! So, I didn't see them except for rounds, but Val (NP) was communicating with them via phone just about all day. Jaime gave Sheri and Val a run for their money today, that's for sure! Thanks girls for keeping up with all of Jaime's issues and needs today...and for appeasing me by running additional tests and communicating with Hematology on my behalf! It means so much to me to know that you are there advocating for us!

Tom is with Jaime now. I called Sheri after dinner to see how Jaime was (I had just left him 40 min. before that), she said the blood was making him "pinker" and that Dr. Crombleholme (head CDH surgeon)came in and increased his Morphine dose. Hopefully that will control his obvious discomfort and make his vital signs stable again.

Now, I can not end this post without adding some "good" news. Jaime's Sildenafil was increased to wean the Nitric Oxide. He does have good bowel sounds and he's peeing like a champ (both before and certainly after the Lasix). The plan is still extubation and feeding in the near future. That is if we can control Jaime's pain and figure out why the other stuff is happening.

So, that's my post! Sorry it's not a great, "Jamie's kicking CDH butt" post. While his CDH is well managed, once again, it's Jaime, so it's all of the other issues not entirely related to CDH getting in the way! (ARGH, poor guy!)

I will be going back to the hospital later tonight when Tom gets back, so please don't call. Honestly, I'm too exhausted to talk anyway! Thanks for understanding!

It's time for me to bathe Jared-who, by the way, is doing wonderful and loving school! After his bath, I promised him a chocolate tornado milk. Yep, that's right, he's acquired quite the taste for chocolate milk, but only if it's made in the tornado mixer...HA!

Have a nice night! (Kristen, we hope you had a GREAT birthday!)

Love,
Sheryl