Update10

Corey's Surgery Updates

4/20/04 - Corey is scheduled for his Laryngotracheoplasty on Monday, April 26th at Lutheran Hospital. We do not know the time of the surgery and probably will not find out until Friday. He will spend at least one night at the hospital and possibly up to a week depending on the exact location of the incision. He will probably have a stent in his airway to keep the reconstruction in place. The stent will likely come out about two weeks after the surgery. We will probably have frequent bronchoscopies this spring as part of the process of getting the trach out. I will try to update this site sometime during the week following the surgery to update everyone on the surgery outcome and Corey's recovery progress.

4/28/04 - Corey had his LTP on Monday. The surgery started at about 7:45am and lasted for five hours. The rib graft and reconstruction went well. They also had to remove a large granuloma which was right above the trach. The doctor said that the granuloma was actually worse than the stenosis in that it occluded more of Corey's upper airway. Part of the reason that the surgery took so long was that the doctors were trying to remove the granuloma without cutting into the trach hole itself. They were successful in doing that and placed a long stent in to prevent the reconstruction from collapsing and to keep the granuloma from reforming. The stent will stay in place for six weeks and then be removed. Corey's recovery went well. He spent two nights in the PICU and came home this morning at 10:00am. He does not seem to be in too much pain as regular Tylenol seems to be holding him okay. He has been breathing pretty well and is back on room air during the day and a small amount of oxygen at night. The only issue that we have had is that the stent has caused Corey to aspirate liquids. We knew that this was a risk, but thankfully it is only temporary. He is able, though, to eat baby food without aspirating. Most kids take a few days to figure out how to swallow with their stent in and are eventually able to swallow liquids fine. Corey started being up and walking yesterday afternoon and he was really fiesty in the hospital. He pulled out his IV at 2:30am last night. I think he was trying to tell everyone that he was ready to go home. Thank you everyone for your prayers. They worked! Everyone at the hospital was surprised with how well Corey was doing.

5/6/04 - Corey continues to do well after his surgery. He is back on room air most all of the time and does not seem to be in any pain now. We are still working on the feedings. He is taking baby food much better now and we plan to stop thickening his liquids soon to see how he does. He has been happy and playing like normal. The only issue that we are having is that he needs suctioning really often, even while sleeping at night. We had his post-operative check-up today and the doctor said that the frequent suctioning will probably persist until his stent comes out in 4.5 weeks. We have been spending quite a bit of time outside since it has gotten nice and Corey is enjoying it. Thank you for your continued prayers.

5/20/04 - Corey is still doing well. We had been having some problems with more frequent bleeding from his trach, so we asked the doctor about it yesterday during a follow-up. We were afraid that it was bleeding because the stent was moving around inside his airway. The doctor did an in-office scope and said that the stent was still in place, but it could still be doing some moving. He decided that the stent should come out sooner than planned to prevent it from causing scar tissue. So, we have surgery to remove the stent scheduled for Monday, May 24th at 3:00pm. They will need to reopen a little bit of his neck incision to get in and cut a stitch which is holding the stent in place. They will then remove the stent and do a bronchoscopy to see how his airway has healed up. If everything looks good, we will start using the speaking valve after he recovers from surgery and eventually start capping off his trach. We are excited that we will hopefully get to hear Corey's voice all day long. Please pray that everything goes well during this process and for safe travel for Jason who will be returning home from a business trip to Mexico Saturday.

5/24/04 - Well, it was a busy last few days. Corey started having heavier bleeding out his trach Saturday morning, so I had to take him in to the hospital. I thought that maybe the doctors would remove the stent right away, but once we got to the hospital he stopped bleeding. So we came home and did not have any more problems with bleeding. Jason came home from Mexico safely Saturday evening (after we were home from the hospital, of course). Monday, Corey had the surgery to remove the stent and it went well. The ENT said that the airway looks great right now. He had a little swelling in his vocal chords due to the stent, but they gave him some steroids to reduce inflammation. We were given the okay to work on the speaking valve until June 8th when the doctor will do another rigid bronchoscopy. So far this morning he was able wear the valve without difficulty for ten minutes. So, hopefully the reconstruction will stay in tact and not scar up in the coming weeks. Then, we would be able to think about downsizing his trach.

6/11/04 - I'm sorry for taking a while to update following this last bronch. We have been out and about doing things in the evenings, so we have been quite busy. Corey had his bronch on Tuesday morning (two weeks following the removal of the stent). The good news is that the granuloma that was right above the trach (that the doctor cut out during the LTP) has not grown back. There had been some concern that it would because it was originally caused by the trach, but everything looks good in that area of the airway. At the sight of the LTP (just below the vocal chords), there is some rescarring. It is too early to tell whether it will get worse, stay the same, or shrink back down. So the doctor decided not to downsize yet and Corey will have another bronch on June 22nd. At this point, as long as the scarring does not get any worse, Corey should be able to get his trach out without further surgical intervention. So, we are asking for prayers that the scarring does not get worse or even recedes because we really don't want to have to see Corey go through many more surgeries and procedures.