Wesley Starts School

My little Wesley is now big boy Wesley going to school. He started school 2 weeks ago on Wednesday, January 4, 2012. He is doing amazing there. He loves calendar time and apparently has a little girlfriend who reads him a book every day!!! He does have a nurse that accompanies him to school, so that makes things a little easier on everyone. He's learning to participate in group activities and beginning to learn how to socialize with other kids his age. He already knows his ABC's, numbers, shapes, colors, and many other things, so that is coming very naturally to him at this point.

He did amaze us just a few days ago and decided to walk around the house completely on his own. He was doing really well walking, but always needed that one adult finger to hold on to or the table to balance. Well, not anymore!!! He decides he wants something, now he can just get up and go! We are super excited about that. Will post a video when I have a good one available. But for now, enjoy the first day of school pics below!!!

Christmas

We were sucessful with our first Christmas at home for 2011!!! A very merry *Children's* Christmas to those who did not get that luxury this time around. Pics below!!!!

Wow, been a while since I've updated Wesley's page here!!! So, here are the big things... Wesley has learned his colors, numbers, letters, and shapes. He even does a little reading and sign!!! We are still working on walking, talking, and eating, but he has come a long way from when we first started. I have posted some of his pictures below and also putting some links for his YouTube videos. The first is a quick video of Wesley taking a sample of some food and the second is him picking out words from "Your Baby Can Read". So super cute!!! Wesley will have his preschool screening this Friday 09/09. Can't believe our little miracle is about to start school. We also have his 3rd birthday on 09/13, oh how time flies!!! Wesley has stayed pretty healthy this summer, let's hope that stays throughout the winter so we can get his trach out!!!!

Wesley Eats!!!

http://youtu.be/t4m5-iuFurU

Baby Can Read!!!

http://youtu.be/F0SVu9rZSvE

And Back to Children's

Wesley had a pretty good month for January, up until the last few days. His GI appointment and vent clinic both went well. We had to reschedule his opthamologist appointment, and now we will have to postpone that again.

Wesley started getting sick last Thurday night 01/27. His pulmonologist increased some breathing meds to see if that would help. He still wasn't any better the next day, so we took him to his doctor on Friday 01/28. He was really lethargic, running a low grade fever, had a really bad cough, runny nose, increased oxygen needs, and really high heart rate. Nothing we did seemed to make him any better. The doctor gave him a flu test, but that came back negative. He gave him some steroids and antibiotics.

He wasn't getting any better, so we called the doctor yesterday. He said that he should have showed some sign of improvement by this time, and it was best to get him to the hospital. Of course, the weather wasn't going to make anything easy for us. We had to have ambulance transport to one of the local Denton hospitals while he waiting for air transport down to Children's. Before he was transported, they did an x-ray on his lungs and performed a few tests to see what was causing his sickness. They determined that he has pneumonia pretty heavily in both lungs and tested positive for RSV.

Wesley and Dad arrived at Children's late yesterday afternoon. They will be carefully monitoring him and giving other antibiotics to help get him through this. He has been back on the ventilator since we took him to the doctor on Friday.

We were told this would be an extended stay..... not sure how long to expect on this one. Please keep Wesley in your prayers.

Sweet Brothers

No Cheeze

Home and Happy

Wesley got to come home last Wednesday, 12/29.... 29 LONG days in the hospital. He is doing well at home, incredibly happy and social. We have notice several changes, some good, some not so good. His feeds are going well, no problems there. His breathing is great! He has only needed oxygen once since he has been home and that was only for a few hours overnight. That was on Thursday night, but has not needed it night or day since. He is much more social and interactive than he was before he went into the hospital. Not sure what brought on that change, but it is a nice change. The one issue we have run into is that he no longer wants to walk or stand. He is receiving Lovenox injections in his thighs, and we believe that may be the reason he does not want to stand. He has a huge knot in his right thigh and several smaller ones all over. He will put some weight on his left leg, but avoids putting any weight on his right leg.... probably due to the knot. However, that should go away in time.

We finally got the official diagnosis that Wesley has a prothrombin factor 2 deficiency (unfortunately he can thank mom for those genes). What this means for him.... I'm not quite sure. We will definitely have to be prepared for Lovenox or other blood thinners for any future surgeries he may have (although we really hope that surgeries are not in his future). We will be going in for lab work on Tuesday, 01/11. He will need to have further evaluation done since some of his blood work may have been scued while in the hospital due to the lack of nutrition (from obvious reasons). We will also have our follow up appointment with his GI doctor that date.

So, we will have lab and GI next week, opthamologist the following week, and vent clinic the next week. If things continue on as they are, this should be our last vent clinic!!! Yay!!! I assume we will also have a follow up appointment with a hematologist once we get the results back from the blood work. This month is looking to be a busy month with appointments, but at least we are home!!!!

Peek-a-boo Stocking

Day 27

We are at the end of Day 27 of our stay in Children's. Wesley has done very well since he got the central line on Sunday 12/19. We have not received the official confirmation on what type of clotting disorder he has that caused the massive clot in his leg. He is on Lovenox shots now and will continue those after discharge. They should help break up any other recent blood clots caused by IV lines or surgery. Although we are still waiting for more information and answers about the clots, it appears they are under control at this point.

Wesley has been receiving TPN (total parenteral nutrition) through the central line for the past week. They put his Mic-key button back in on Wednesday to start feeds. They started with just a very small amount of Pedialyte through continuous feeds and continued to increase the amount each day. He was switched to a half strength formula over the weekend and is currently on his full calorie feeds. Once he was tolerating the full feeds, the doctors were able to stop the TPN, so he currently is not using the central line (after all he had to go through to get that line!!!). But that's a good thing, means he's closer to home. His feeds are currently running over 3 hours, and then he gets an hour off. We need him to take his feed over 1 hour for him to come home. Barring any unexpected set backs, he should be home this week... FINALLY!!!!

We did end up spending Christmas at Children's, but it was fun. Santa came to visit Wesley early in the morning and left presents for him and his brothers. The pictures below are from Christmas Eve and Christmas Day. It's nice to finally get some smiles from this sweet boy!!!

Christmas Eve:

Christmas Day:

Latest from Children's......

Overview of the last week at Children's...... Keep in mind Wesley was initially admitted on Wednesday 12/01, discharged Monday 12/06, and back in the hospital the following day on Tuesday 12/07. Wesley had his MRE of his intestines on Friday 12/10. After the doctors had a chance to review the results, they came to the mutual decision that Wesley would need surgery after all. They made the decision around 2:00 on Tuesday 12/14, and we were in surgery just a few hours later. There were 2 objectives with the surgery.... remove any obstruction that may be blocking his bowels and get a central IV line in so that they could give him nutrition through IV since he is unable to take anything orally (and he had gone basically 2 weeks without food). As far as the bowels were concerned, it was going to be exploratory. The surgeons said it would most likely be one of two things, either adhesions caused by scar tissue from previous surgery that were compressing the bowels, or they would have to remove part of the bowel that was no longer working and reconstruct the bowel. Luckily, they did not have to cut into the bowels, just had to remove the adhesions surrounding. The second objective to get the central line in was unsuccessful. They tried on both sides of his collar bone and both groin areas. So he came out absolutely miserable and full of marks from the IV attempts. They said that they would have radiology follow up with him the next day to try to get a PICC line placed. The doctors were not able to get him on the schedule for Wednesday for the PICC, so he was placed on the charts for first thing Thursday morning.

We went down to radiology for the PICC line around 9:30 that morning. Of course, they gave the disclaimer that they may have the same problem that the surgeons did on Tuesday and may not be successful in placing a line. Just over an hour later I got the news..... no line. He was brought back up to his room after he was cleared from anesthesia, and his doctors came to make their assessment. He needed a line, we did not have an option.

It was now time to take a more aggressive approach. They said he would need to go back into surgery, and if necessary, the surgeons would have to do a cut down to actually get down into his vein. They took him in for another MRI (I think they called this one an MRV?) to see his veins to make sure they were flowing well and would be able to get a line in place. After that, he went straight to the OR for the central line. The doctors said that the veins in the groin looked promising, but if they could not get a line there, they would have to go for the jugular vein in his neck. This was also his second time under anesthesia in one day. Surgeon came out and said they were unsuccessful in his right groin, but did get a line in his left groin.

Things were starting to look up, and we thought we were through the worst of it. He still had a good amount of gas and build up in his stomach, so they placed another NG tube through his nose to his stomach to help relieve some of that pressure.

Then early Sunday morning we ran into our next unexpected problem.... his left leg (the one that had the central line) was purple and cold. The IV fluids were stopped and he was sent for an ultrasound. He had a blood clot. Obviously that line would have to come out (after only about 2 1/2 days of use.... it was supposed to last for weeks, even months). The blood clot extends from his upper thigh down to his knee. This would need to be addressed, but now we have lost access to fluids again.

He went back into surgery on Sunday afternoon for a line in his internal jugular. The surgeon came out to talk to us, and we were told that she was able to get access to his external instead of having to use his internal jugular.

Shortly after that surgery, they started him on Lovenox shots for the clotting issue which should help dissolve the clot he has and prevent any clot in the new central line. They are running tests to determine if he has a clotting disorder, but it is pretty clear that is the case. He will now have to follow up with a hematologist (along with his list of other doctors). We should know more specifically what the tests revealed in the next few days.

So that is where we stand. Now we are waiting for bowel sounds so that they can start some Pedialyte feeds and start weaning off the IV fluids. I just hope that the surgery fixed the problem, and that we don't continue running into the same issue in the future. It is always a possibility that he may form more adhesions with the scar tissue from this latest surgery.... let's just pray that's not the case. Please keep him in your prayers, he's always been my little fighter!!!

So Now..... We Wait

Oh how crazy these last 2 weeks have been. Wesley had an appointment with his GI doctor on Tuesday 11/30. Everything went well, a few changes to his feedings since he has lost some weight (he weighed in at 22.5 lbs, 30 in). Well, we got home, and he started acting like he was in a little discomfort. We didn't figure out what was wrong until a little after 8:00 that night when he gave us back all of his feeds for the day and then some!!!! We've had this happen plenty of times before, but it has been over a year since he was admitted to the hospital for this. So we held his 8:00 feed that night and planned to give Pedialyte for the rest of the night and pick back up on the feeds the following day. Well, he wouldn't take the Pedialyte either, and by early morning he was severely dehydrated, and we were forced to take him to the Children's ER. They sent him for x-rays and an upper GI exam. With the contrast from the upper GI, there was a problem noticed in his small intestine. Nothing was really getting past that point, but it did not appear that there was a physical blockage. He stayed in the hospital for the next few days while we waited to see if he would self correct of if he needed surgery. He finally started accepting some feeds, so they sent him home on Monday night 12/6. Less than 24 hours later (about 12 hours to be exact), same problem, back in the ER. They are doing some thorough studies this time to make sure there are no unseen issues. He still may have to have surgery, it has not been totally ruled out, but is very unlikely at this time. Unfortunately, this may just be recurring problem that we have to handle when it flairs up. His doctor said this is a relatively unresearched issue as there are very few micropreemies that make it to the toddler age, and of those, not all have this problem. It's not something you want to hear in the medical field, but it's starting to become a trial and error treatment for him with different meds. He had an MRE (Magnetic Resonance Elastography) performed today (very similar to an MRI, feel free to google it if you want to know more about it). It takes a while to review the results, so it may be a day or 2 more before we find out the results. Hopefully this will give the doctor's a more clear idea of what is going on without doing a CT scan or an endoscopy. This has turned into a waiting game, but I'd rather wait and have some diagnosis ruled out than to have the continue to happen again and again. He has been in good spirits the last few days, but I know he would love to be home (just like the rest of us!!!). Just continue to keep him in your prayers!!!!

New pictures:

Halloween: