Monday, December 27, 2010
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:
Monday, December 20, 2010
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!!!
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!!!
Friday, December 10, 2010
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!!!!
Halloween:
New pictures:
Halloween:
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