Thursday, August 09, 2007

An Update...Long Overdue

So...I believe it's time to return from my blogging hiatus! It has been a busy few weeks for us again and then we spent all of last week out of town. We have only one, wait...two more vacations planned for the rest of summer and they are both short and not set in stone! So...where to begin.

First - Mr. B. I have had so many people requests updates and I'm so sorry for not posting sooner. Here's the going ons for the last week:

July 27
B was going to have surgery today on his liver - the tests that were done yesterday revealed that the fluid pooling in his stomach is bile that's backing up from the liver. They were going to do surgery today, but he had a fever spike last night and has an infection they have to address first. He's on new meds and has a pain pump that D can administer as needed. Hopefully the infection will be gone by Tuesday and he'll be able to have the surgery then - he has to have it or the bile will poison him. As soon as the surgery happens, they're going to work on giving him clear liquids and feeding through the tube. They won't put the PIC line back in b/c of the infection, and since the tube is so close to the heart they don't want to take the chance of infecting the heart. So for now they're just giving him the IV drip. As soon as they get his nutrition sorted out and he's eating again, they will start to address the problems with the heart.

He did have a few more episodes last night with the aggression and reactions to the meds, but is resting now. It's looking like they will be there about 3 more weeks, and D is not going to the new house until B can come with her. She had to go home without him when he was born, and won't do it again. She is periodically going to the 4th floor to the Ronald McDonald house and taking naps. She understands that she needs to take better care of herself so she can stay strong for B.

July 29 - 8:15 a.m.
From D....
Hello everyone, I am just taking a few moments to update you on B's condition. We are waiting for Tuesday to get here so he can have his procedure (possibly Monday). So right now the doctors are just trying to keep him as comfortable as possible. The morphine pump does help some but he still has discomfort and pain. Since Yesterday his belly has been getting larger so hopefully it will slow down so B can continue getting his strong antibiotics to get rid of as much bacteria as possible before he goes back in. I do know that the procedure will take about 2 hours and I should know today if it will be done Monday or Tuesday.

On a good note he ate about 1/4 of a Popsicle yesterday and had some Apple Juice. This was awesome!! especially considering that it has been 13 days since hes had a meal. We have been moved to the PCU but I did not realize until yesterday that it is still apart of the ICU so there are still restrictions but B is watched very closely.

Thanks for your continued prayers.

July 29 - 12:30
I just spoke with D - B smiled at her today for the first time in a while. They're hoping to do the surgery tomorrow to get the bile out - his stomach is getting bigger, about an inch a day, so they need to get in there, find the hole and fix it, and drain the bile out. His liver and spleen are becoming more enlarged and they're not sure why but can't really do anything about it until the get the infection cleared up. He's just resting, and she's trying to take it easy and conserve her energy so she can take care of him. She sounded much better than the last few times I talked to her - seeing him smile really lifted her spirits. They want to do some research and tests on him since it's such a rare things that he has. The dr's have never seen this in children, and are trying to learn as much as they can from B. As soon as they get him relatively stable and he's eating again they can start figuring out what makes his condition different. So little B will go down in Tx Children's History!

She's been reading to him and counting and doing things to try to keep his brain stimulated. The dr's told her that his speech and memory would regress so she's trying to make sure that it's as little regression as possible. He still reaches for his blanket and puppy so that's a good sign. I'll talk to her again tomorrow when they find out if he can have the surgery or not. In the meantime, just keep praying. She's so grateful for every one's prayers and thoughts. Oh, C's family will be coming next week and her mom is trying to get here as well.

July 30 - 2:11 p.m.
D just called and said B has been in surgery for about 30 minutes now. He's been fever free for over 24 hours so they went ahead and did it today. C is there, too. She said B cried most of the night and was in a bit of pain, but was asleep when they started sedating him today. So just keep praying for skilled hands of surgeons and a speedy recovery. I can tell she is very nervous and rightfully so. I'll post again when she calls back after he is out.

July 30 - 7:27 p.m.
B is out of surgery. It was supposed to take 30 min to 2 hours, but took 4 hours. They put in one stint but couldn't not reach where they needed to put in the other one. It had something to do with the fact that there was some narrowing from the gallstones and the area was too narrow to get the instruments and the other stint in. He will come back in 4-6 weeks to have the stint removed. The stint is there to get the bile to drain to the right organ area. She said only 4 hospitals in the country have done this type of surgery--so glad they live here in Houston where TCH is willing to do it.

De said he isn't doing very well. He is on oxygen and his blood pressure is higher than it's ever been and his breathing rate is high-he's taking very shallow quick breaths. The surgeons will wait till tomorrow to see how this is healing and then decide what to do about the other small leak they can't reach. He will have no liquid or anything for at least 24 hours and so maybe tomorrow eve they'll try some water or pedialyte sips. C was there all day Friday and today and the weekend, so that's been good. But he has to go in to work tomorrow. His boss is being really great though about letting him off so far. I can tell D is super worried. She's just wondering if they are ever gonna leave TCH. I know they will soon.

July 31 - 7:50 p.m.
Today was a good day. B is being weaned off the pain meds and was on Tylenol when I left. D was able to laugh today which was good. I will post later tonight all the details from today but mostly was a good day, except he's not talking. But he starts clear liquids tonight so say a little prayer. Check back later tonight for a full update.

July 31 - 9:36 p.m.
Okay, here is the rest--One leak is fixed and has the stint to drain it properly. B/c of the gallstones B had, there is a narrowing in an area and that is where they could not get the other stint. They are hoping that hole will seal itself. We'll see. If it does not, then there will be another surgery-possibly open instead of using a scope. He is scheduled to have a procedure tomorrow to put the pic line back in--he'll be put under for it, so there is some concern. They will start OT/PT therapy for him. He threw a ball to me today, pointed to the one that was his favorite and clicked color buttons to change colors on the bubble machine. All very good signs, but no talking.

Steph, he seemed to love the bear-we played it many times. And Ames, D loved the guardian angel.

Priority one-get leak fixed
Priority two-get nourishment in B
Priority three-get him moving-arms, legs, sitting up, walking, etc.

After all this, they will look at the spleen, heart, and other organ problems.

August 1
Talked to D at 9 pm. Doctors were in and out all day--which is good-everybody is coordinating finally. Genetics came in and are doing some tests and that's great cause initially they couldn't get an appt until November. His belly is still soft which is a good sign and maybe the other leak is sealing itself. I think he'll have a GI scan tomorrow to look at his digestive track and see how things are flowing.

B whispered ice cream today, so they tried giving it to him and he gagged. He won't take any juice by mouth or anything else, but he's getting 1/4 ounce of pedialyte in his G tube every hour. Sometimes it makes him gag, so they are just being cautious.

And now the good news--D left C at the hospital this evening and went to her new house --granted she was only there to look for some of B's records--but she left the hospital for the first time in over 2 weeks. YIPPEE! She said the new house was bigger than she remembered. I think I convinced her to take a short nap before driving back to the hospital tonight. Her MIL comes in Aug 8--I think she said her sister will be coming, then her MIL, then her mother. So maybe Family Feast will be good to get a few meals over there for them.

Today was a good day -progress, no setbacks. yippee!!

August 3
From D...
I am so sorry I have taken so long to respond but as you know our days and sometimes minutes change from one day to the next. I don’t even know where to start with the update so I will start with the good news first.

Yesterday- B whispered “CHOCOLETO” which means chocolate milk. You can only imagine my excitement! I was even more excited when he pointed out that he wanted mash potatoes. He took 2 small sips of the chocolate milk and 3 small bites of mash potatoes. He gagged with both but it was still progress b/c he asked for it. He also cried when I tried to leave the room to get coffee. This is also improvement b/c it shows he is more alert. Before this point I could leave the room or sit on the sofa and he would not respond at all. Now he wants me in his sight at all times!

Yesterday (Thursday 08/02/07) he also had the central line put back in so he can continue getting nutrition via his veins. This time it lasted longer than the 20 mins it took the first time. This is another sedated procedure so B has been sedated 5 times within this 2 ½ week hospital stay. Anyway about 1 hour into the procedure Dr. Stein left the procedure long enough to give me a quick update. He informed me that there was difficulty getting the central line in his Superior Vena Cava (vein in the heart that carries non-oxygenated blood from the body to the atrium). The Superior Vena Cava is supposed to be on the right side so when placing the catheter in his left arm the catheter should have followed the vein to the right side to the SVC. When the drs. tried this the catheter would stop and remain on the left side. When an ultrasound was done, it was discovered that B has a Superior Vena Cava on the left side, wouldn’t know, another discover while performing anther procedure! I told them I don’t understand how this was not detected since B has had heart ultrasounds at least twice a year since birth! Apparently since this is another rare condition, it’s not something that is commonly looked for. In B’s case it was discovered by accident. I tried to find some information about this but on the internet it just said that only 0.3% of the population has this. I am waiting on a visit from his cardiologist to explain this further so I can have a more accurate understanding.

As most of you know B underwent a 4 hour procedure on Monday to try and close his bile leak into his abdomen. This procedure should have lasted between 30 minutes to 2 hours but it lasted 4 hours. At the 3 hours mark one of the doctors came out to say B was stable and that they located the leaks and the procedure should be completed in about 30 minutes. 1 hour later the procedure is finished but they could not fully accomplish their goals of stopping the leaks. This was important because B can’t live with a continued bile leak in his abdomen. They were able to place a stint in one of the holes so that the leak would drain into his intestines where it should go. However, there is a narrowing in a section of B’s liver, which is believed to come from the gallstone he had. The doctors believe that the stone got stuck while trying to pass which cause the narrowing. Because of this, the smallest instrument available would not fit through the tight spot, making it impossible to place the stint and therefore a small leak remains. In adults, there is a high probability that this type of leak will stop on its own. However, this is not a common condition in children. This makes it hard to estimate the likelihood of B’s leak stopping on its own.

Today B will have an ultrasound to see if there is a leak and if so how much. If there is a leak, the interventional radiologist will remove the fluid and we will then have to discuss alternative ways to stop the leak. My prayer is that the leak has stopped. This way we can move on to the next step in B’s care and that is to determine the best way for B to get the nutrition he needs. My wish is that when he returns home he will not be fed through his veins but through his Gastric button that was placed in his belly on July 17th.

Now for the last part of my update, in wishing to understand B’s condition Geneticists have now become part of B medical team. We are hoping to discover a diagnosis so that B can have a better quality of life and understanding of why his body is unique. Also this information will help when he is an adult. He needs to know if there is a risk of him passing some of these conditions on to his children so that he is able to make well informed decisions in the future. I know this is many years ahead but I really want to spare him the heart ace that I and others who love B have gone through.

August 6 - 10:22
D just called - she said it was the worst weekend they've had so far. B's temp spiked up to 102.4 while he was on Tylenol, and he was very cranky and sore and wouldn't let anyone touch him. They put him back on the morphine for the pain. He still isn't eating through the tube.

The stint they put in Monday to stop the bile from leaking has dislodged and is stuck in his intestines. He's in surgery right now to drain the fluid to see if it's infected, and since the stints aren't working out they will just make another incision in his tummy and put a drain in.

August 6 - 4:16
D called about 3:30-they put in the drain and drained about 2 liters of blood and other fluids from B's abdomen. The drain will stay in for a bit. He is still pretty groggy from the procedure. He was about to go in for a ct scan of the belly and then they are going to do open surgery on him to close up the holes/leaks, etc. He currently has 3 nurses assigned to him now and they are checking him very often--they are trying to make sure that he isn't losing too much blood, and if so will do a transfusion. Right now, he's not needing it though. She'll call back later with an update or I'll call her.

August 7
From D...
Last night was a bit busy and rough for us especially B. B's temp went up to 103.3 twice, once around 10pm and again around 3:30 this morning. Of course with the high temps comes the shaking and high heart rates. Its 5:30 am and he has just calmed down.

I hate to leave the new on B at this, but this is all I know as of right now. I am waiting to hear back from a friend that was suppose to visit him today. If I hear of anything else, I will post this evening!

As a lot of you already know, we spent all of last week in Mississippi. This is my favorite place on earth and it was spent with some of my most favorite people on earth!

JD spent the entire week riding the tractor (riding lawn mower), playing in the sprinkler, and running around the yard in the nude!! He also helped Nana cook, which he LOVED!

When I wasn't watching JD have the time of his life I was either eating or shopping. We did a lot of both!

JD's favorite thing about going to my Nana's house is the food we consume. I've come to learn that a southern meal is not so much about the meat you server, but the sides you have with it! I'm not sure what my favorite meal was - it's a toss up between the honey-baked ham, corn bread, cream corn, green beans, purple hull peas, garlic potatos, strawberry shortcake, key-lime or banana-cream pie and the chicken-fried-chicken, mashed potatos, gravy, cream corn, buttered squash, blackberry cobbler, and homemade banana pudding! Oh my...we did some eating!

I could go on and on about what fun we had...but pictures are better, right?

JD in the wagon hooked up to the tractor
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JD helping Nana bake a cake
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JD with his cake
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JD enjoying his cake with Nana
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JD with his water gun
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...watering Nana's flowers
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...being a boy
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...enough pictures already!
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JD with his PawPaw
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With my Nana and sweet sister!
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...playing with Nana
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Another update is JD's sleeping situation. We have officially moved to a big boy bed! This is after hours of screaming when it came time to nap or go to bed for the night! I say hours and I mean it. He's done so much screaming and carrying on the last few days, he lost his voice. Completely lost his voice. Which was a good thing when he threw fits, but not so good when I couldn't understand a word he said!! So far the switch is going fairly well. The first night was great, last night was so-so. He's now waking up at 6:30 a.m. which is AWESOME, because you know, I love to wake up early!!

I guess that's about it right now.

Oh yeah...and as far as this baby...she's in there and kicking like crazy! I'm 27 weeks now, so we are almost to our 3rd trimester! Woo-hoo!! Oh, and since I've failed to update my blog, I also no longer have placenta previa. So this means no c-section and hopefully fewer worries! Whoo-Hoo!!!!

I hope to speak to you all again soon...Hope all is well!

1 comment:

The Silva's said...

My prayer group and I have had B on our prayer list for several weeks now, he is being prayed over even as you read this. Our hopes and prayers are that God lay his hands on this special child and heal him and his family of all the aches and pains, of all the hurt they feel in their hearts, that they will all go home, happy and healthy as one big family. These are our prayers for that sweet little boy. I truely believe that God does big things and one day that will come to this family as well.
On a lighter note, I am so glad to hear that things are going so well for you and that little one of yours!! I bet you are counting down the days to see that precious little girl of yours!!
Can I add GO PINK!!!
Sorry with two boys all I can do is live vicariously through other people and the little girls they have:)!
Have a terrific weekend!!!