Thursday, August 23, 2007
Things from the past month:
1. JD is doing very well in his big boy bed. Some nights he does GREAT and doesn't wake up at all, others he'll wake up once but goes right back to sleep once I put him back in bed. I'm loving the new bed because we now have a wonderful bedtime routine. We read a few books, which I love because he now starts telling me the stories. We say our prayers afterwards and there is nothing more precious than watching him clasp his hands and try to keep his eyes closed for longer that 5 seconds. I do most of the praying, but he chimes in with "yeah..." when we bless everyone under the sun and "what else" after I say AMEN!
2. JD can't wait for his baby sister to arrive. Every time someone new comes over JD shows him "My Kenzie's room" as he calls it. He refers to her as "My Kenzie" and it's precious!! He's also obsessed with looking at my belly and doesn't hesitiate to lift my shirt up regardless where we are at - the waiting room of the doctor's office...the grocery store....Chick Fil A. The other day I was changing him and he said, "Mama, I play peek a boo with Kenzie. Open! Open your shirt!"
3. Our dear friends Kate and John welcomed their first baby into this world yesterday evening. John Alan was boy at 6:03 p.m. weight 6lbs. 9oz. and measuring 19 inches long. He's precious and both mommy and baby are doing well. This only made me that much more excited about Miss MacKenzie's arrival! It was also so precious watching Jimmy get all excited about holding J. I can remember only a few years back when he was nervous to hold other babies, now he's an old pro and more than ready to hold this sweet girl!
4. We've got the nursery painted and have ordered the rest of the decor and all the furniture. It should be in the first week of September and I CAN NOT wait! Did I mention how excited I am?? This girl business is a blast!
5. JD starts back at MDO next week. We went today to meet his teachers and he was so excited. I look so forward to the new year and I'm so grateful that JD is excited as can be. He did not want to leave the classroom this evening! The Lamb School's program is so wonderful and I am so blessed to have JD involved with it.
6. Potty traning hasn't been going as well as it was. Although, he has learned how to pee outside. The other day I took his swimsuit off to dry out after we got out of the pool. Before I could get him in the door he started peeing on the back patio. He looked like such a big boy. He had that huge arch in his back and was spraying the ground with so much concentration. I couldn't help but laugh! A few days later he was laying on his changing pad and had his back arched again with his bottom raised off the pad and said, "Mamma, I pee on the fan?" as he pointed it towards to ceiling. Ahh...boys...what can you do?
7. Lastly, I am getting there. As in, getting closer to being done with this pregnancy. I honestly can't complain. I feel great (a lot better than I ever did with JD) and have had it pretty easy so far. I am 29 weeks and 4 days...so only 10-1/2 more weeks until my due date. At this point I don't know if my doctor will take her early or not. I am no longer going to be scheduled for a c-section, but she might still take her a week or two early depending on the condition of my cervix! We shall see...I have no complaints with mid-October, say 37 weeks?
Monday, August 20, 2007
Sunday, August 19, 2007
B IS OFF LIFE SUPPORT AND OUT OF ICU
Watching what my little man has gone through in the last five weeks will make anyone believe in miracles!!! B is soooo strong! He puts me in mind of the gospel song called “Yet Still I Rise” –never to give up, never to give in against all odds…! (By Yolanda Adams). During B’s five week stay at the hospital, he has had 10 surgical procedures with 8 of them requiring anesthesia and a blood transfusion. This is a lot for anyone especially a 2 ½ year old little boy! Yet, through the Grace of God B is awake and off life support after being on life support for a week and asleep for 7 days!
I am so overwhelmed with emotions that it’s difficult to find the words to explain my thanks to GOD for saving my little man’s life and my appreciation for your non stop support. I am well aware that there is still a very long road ahead. We still have to find a way to get nutrition into B other than the vein, get him walking and talking again (I can’t wait to hear him say mommy and daddy) and clear up his phenomena. But, after seeing what B has overcome and knowing how strong he is (B has people praying for him all over the world). I know all of these things are attainable. I just have to be patient and take it one day at a time.
I have no idea how much longer we will be here at Texas Children’s Hospital. However, I am no longer worried about our length of stay here; I just want B to come home. I know this will happen one day which is very comforting to me. This thought is what I will hold on to. I will continue to keep you all posted when time allows. Thanks again for all of your support and prayers!!! The prayers are certainly working!!
Oh, we are on the 7th floor (PCU) again. PCU is a step down from ICU, but not the regular floor. B will still be monitored by the ICU doctors and watched closely during his preparation to move to the regular floor. However it’s looked at, this floor for us stands for improvement and we are excited about Byson’s improvement.
Can we all say AMEN together???!!!!!
Saturday, August 18, 2007
JD has a lot of toys. By no means would you walk in his play room and think *spoiled* but he does have a lot of toys. My weakness is clothes. So if you look in his closet you might think *spoiled* but I know my weaknesses and therefore stear clear of Baby Gap and Dillard's Ralph Lauren section except during sales. Anyways...most of his toys come from birthday and Christmas with a few (and I really do mean only a few) in between.
I've come to realize buying toys is sort of like going up to bat. After bringing the toy home, taking it out of the package (which is the most difficult part of all), and handing it over to the 36-inch tall man, it becomes one of three different things: an out, a hit, or a homerun.
They play with it for a few seconds but it really wasn't worth the cost and DEFINETLY not worth taking out of the plastic, untying the 155 twist ties, realzing it needs batteries, finally finding the right amount of batteries in all of the remotes you don't use, now needing a screwdriver, a phillips head screwdriver made for eyeglasses, unscrewing the battery case, inserting the batteries, rescrewing the battery case. After a few seconds they get bored and would rather play with the screwdriver you forgot to put back up.
Once you go through the gruelling process of preparing it for play, they actually play with it. They might play with it several times. Eventually they loose the pieces though or in our case, leave it on the floor when they go to bed and the dogs chew it up.
Once bought and assembled it becomes their prized possession. They run straight to it as soon as getting home, or waking up, or getting out of the bath. Most nights you either pry it from their hands or just let them sleep with it. You watch them sit and stare for minutes at a time just admiring the toys beauty. It really is, well worth the cost and every minute of assembly. It's now been deemed the perfect toy!!
In 2-1/2 years we've had more OUTS than anything, but a few HITS and your occasional HOMERUN. Yesterday, we had a homerun (which is great since our Astros aren't doing much of those these days). Let me first say that JD is ALL BOY. The only present he still plays with from Christmas is his tool box. A couple of weeks ago he got a small tool bench with a couple of tools, he's now played with this non-stop. So, yesterday, my Nana (who's in town and has witnessed JD's obsession with all tools - real or not) found an electric Bob the Builder drill. She's still the wonderful Nana that shops for JD at Target while I look at all the girly things I soon get to shop for. Once done registering for just a few more things, I found Nana staring at a drill and a saw. That's when I discovered this. It only took a few minutes of "should I?" before I realized YES! I should indeed!
And he loves it! It was a homerun from the minute I pulled it out of the box. I started this post a few days ago and I'm just now finishing and I can say that he's played with it non-stop since last Friday! He's in toy or should I say, tool heaven!!
He's now slept several nights with the electric, drill, electric saw, and real flashlight. The other night he woke up in the middle of the night and knocked on our door. I got up and opened it and he was standing there with all three tools in his arms. I took him back to be and told him he could sleep with one, the rest had to go on his shelf until morning. Well...he's a smart guy and picked the flashlight of course. So as I laid there for the next 20 minutes I had a light shining in my eye while JD asked, "Mama, your eyes closed? Mommy, you see the light? Look, mommy, I see my fan. Mommy, are you sleeping?" I finally said good night JD and went back to my own bed. I guess he finally got tired of the light and went back to sleep!
Friday, August 17, 2007
I have GREAT NEWS!!!! B is off the ventilator!!! They removed it today and he is breathing on his own now!!!! He still gets oxygen to help him, but no more tube down his throat, no more tube taped to his face. You can see his little smile again and he is breathing all on his own. This is the most positive thing in a couple weeks!!!! D says he looks so much better. She knows it's still a long road, but is able to believe now that he WILL be coming home with her and C.
Leaks under control-check
Sitting up in bed-check
Nourishment other than IV-soon
Getting into trouble with the other kids--priceless!!!
Talked to D tonight--B is still stable, which is good. However, he had an ultrasound and xray this morning and it revealed a pouch of fluid near his spleen and one near his bladder. The spleen one has been there before, the bladder one is new. They will sedate him tomorrow and go in with a needle to remove the fluid. They will test it, as always, to see if it has bacteria in it and if so, they continue more antibiotics. They will also adjust the drains that are already in his abdomen. Usually the fluid is bile and blood.
The good news about going in this time is that B's blood pressure and heart rate have gone down close to normal and his temp is only around 100. In the past, his rates have been really high and he's had one with a high fever too. This will be the fourth time they go in to remove fluid and the 6th time he has gone under anesthesia since after the first procedure. Goodness-poor little guy!!
D has been a bit down and had a rough time just being on the phone--we all know it's hard to just keep saying the same things over and over. C called Jonathan and said that one of the nurses said that B is getting better. That was good to hear.
Amy and I will go down there tomorrow between 9-10pm and stay until 5:30-5:45am so D and C can get sleep again. I know they didn't get much last night between xrays and ultrasounds. And I'm sure they won't get any tomorrow during the day since B will be having his procedure.
B is kinda still stable. He had two more drains put in yesterday and had some fluid removed, so he went under anesthesia and that always seems to set him back a bit. But he did pass some bile and bowel stuff out and that is a first since he's been in. Again, he had a really sweet nurse last night--that always makes a difference.
He is off morphine and on methadone to help him control the pain while getting off the morphine. He is more awake at times, but this is hard b/c he is still on the ventilator and when he is awake, he gags on it, wanting it out. They were hoping to get it out soon. They tried once yesterday but he wasn't ready.
He loved when we read to him--it brought his heartrate down and he looked at the pages. I'd ask if he wanted another story and he'd nod yes. He pointed toward the end of the visit which was a good sign. He's still very critical, but somewhat stable. Apparently during the day yesterday after the procedure was worse, but things had calmed down when we got there last night.
Monday, August 13, 2007
Talked to D at midnight. Today was a pretty stable day. She and C were both there all day and she got to have some time to go outside and take some breaks today him there all day. She is down--completely understandable, but hanging in there. She laughed today a few times on the phone and with the nurse, and I know B must LOVE hearing her laugh. I know that even when in a coma or on life support, the deep subconscious can still often hear what you are saying--and we know B is listening cause he nods in response.
They tried reducing the amount of oxygen they were giving him down below 35%, but it got rough for him, so they left him on where it was. Unfortunately, B is still on life support, with the machine breathing for him. I think this is just to conserve his energy to heal from the surgeries and to help him b/c of the pneumonia and lung collapse. But not sure when he'll be off of it.
D said she read him 20 books today. He kept wanting one more. His heart rate went down to 120 (which is good) while she was reading to him--I'm sure he just loved hearing mom's voice reading to him. His blood pressure has gone down some too. He is still critical, but stable and D told me the nurse is really nice tonight, too. Yippee!
Keep those prayers and anyone that can give blood, it is much appreciated.
Sunday, August 12, 2007
August 12 - noon
Last night was such a great night with B. Although he is pretty sedated, he would open his eyes occasionally. He gave Amy and I both got smiles and would nod in response to yes and no questions. Amy would hold his hand and he'd clutch it and if she let go to sit down, he'd reach for her and make a little sound, and so she'd go back and hold it, and his heart rate would go back down and he would get soooo peaceful.
He had a few small episodes of discomfort, but nothing too major. His fever spiked to over 104, but was coming down just before we left around 6 am, and they were due to give tylenol at 7. Devona and Charlie got to go have dinner together and have a much needed 5-6 hour nap TOGETHER. They looked like brand new people this morning. Guys, this is by far one of the best visits I've had and one of the best nights the entire Burt family has had. He had the sweetest nurse who treated him as though her were her child. You all know, a nurse can make or break your stay in a hospital.
Okay, now for what is needed!!! B's blood isn't coagulating, so he is still losing some blood. They are trying vitamin k to see if that helps. If not, he'll need more blood. His color looked so good yesterday. He had that little golder brown glow that we all know. So, anyone can give blood at any gulf coast regional blood center. www.giveblood.com
There is an office at Fallbrook and 1960 near the tx childrens satellite office. Just give them Byson Burt's name and that he is in Tx child hosp. And the wonderful news is that if he doesn't need it, it won't go to waste. We've met several other families up there who I'm sure could use it, so it will go to someone.
I talked to D at 11:30 and she said B was still stable and that he smiled at her and was reaching out to her. I was so happy. And when she called, she was all chipper!! She's got her hope and her fight back now and so does that little man.
Hmm...and I also thought I'd share some pictures that I took of JD today. We went to a birthday party for JD's friend Carder and had a blast! I swear, this little man just melts my heart!!!
Saturday, August 11, 2007
July 11 - 10:07 p.m.
B is out of surgery. His transfusion went well. They found the lodged stint in his appendix and removed both the stint and the appendix. His fever is constant and has reached 104 several times, but he is sedated and sleeping now. He will be on the ventilator for some time b/c it's just taking to much for him to breathe on his own right now with the collapsed lung. D and C are hoping to get a room at the Ronald McDonald house for tonight and are planning on trying to get some rest. Keep them all in your prayers. I think they're needed more than ever right now!
Thanks so much for the prayers. I have already printed several out for her, but if anyone would like to comment or email a prayer or word of encouragement for D, I'd be more than happy to take it to her. She was overwhelmed by the letter I sent in yesterday from a friend of mine that she didn't even know, I think it was what she needed to see at the time - that her family is literally wrapped in prayer. So thank you Meghan over at The Silvas for taking the time to send the sweet message.
Anyways...the update is not good but we are praying HARD!
August 11 - 8:49 a.m.
D called at 8:30 this morning. They took B in for emergency surgery. His stomach was hard as a rock last night and didn't subside. They did xrays all night and at 6:30 told her they really had no other choice but to go in to open surgery. All this time, they have tried to do it using the scopes making small incisions and being guided by a camera, but they will have to make a large incision and go in openly. They also are in a critical stage and must give him a blood transfusion.
Friday, August 10, 2007
B is out of surgery, but he's still very critical. They were able to do the first procedure. A specialist was able to get the stint in the area that they were not able to get in before. This procedure only took a little bit. The second procedure however took a lot longer. It was only suppose to take 30 minutes and it took 3 hours. This was where they were re-routing the fluid that had buit up in his stomach.
D was not able to see him for a while afterwards, from what a girl in our playgroup said, she finally had to demand to see him.
That's all we know for now. He's out of surgery but in critical condition.
I know it goes unsaid, but keep praying...
B goes in around 2:30 to get the anesthesia. He will have two procedures starting at 3 pm. The first will be to add another drain in his stomach to drain the fluid out--he had one put in already so this will be a second one. Then, they will try to reach the space where the stint is needed that they couldn't get to before. If they can't get to it, he will go through the liver to get to it to stop the leak. (More info below regarding this)
Hey guys, When I posted B's update yesterday we didn't really have the latest. We hadn't been able to get ahold of D for a little over 24 hours and we were all worried. Rightfully so, the news is not good. Please, please, please keep praying for this little guy and the strength of his family and friends.
The news is not good. B is back where he was earlier in the week. Even after removing the 2 liters of fluid from his abdomen on monday, he now has fluid back in his abdomen again and will have to have another procedure. He also has a touch of pnuemonia and fluid in his lungs and a small collapse in his lower lung. They are probably going to get a liver transplant dr to do the procedure cause they need to get to the stint area that they couldn't get to before and if they can't get it, the transplant dr will go in through the liver to do it. Otherwise they have to do open surgery, but they don't want to because they aren't sure that he will stitch up well and because he is so fragile. This little man has been through so much and he is not even 3 years old yet. Please keep him in your prayers and pray for the drs treating him.
Thursday, August 09, 2007
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:
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.
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.
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!!
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.
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
JD helping Nana bake a cake
JD with his cake
JD enjoying his cake with Nana
JD with his water gun
...watering Nana's flowers
...being a boy
...in the firetruck with Uncle Bubba's helmit!
...enough pictures already!
JD with his PawPaw
With my Nana and sweet sister!
...playing with Nana
...in Nana's big bathtub!
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!