Things are moving in the right direction! Jody’s feeding tube was placed on Monday without any complications. He has a PEG-J tube which means it has two parts: The “G,” which goes into his stomach (used for medications), and the “J” which goes into his jejunum, or middle portion of the small intestine. The “J” tube is where the liquid food is going. Since Jody is post lung transplant they are very cautious and do not want food going into his stomach because of the risk of reflux, and in turn aspiration into his lungs. As some of you know, Cystic Fibrosis negatively effects Jody’s ability to digest food so he needs to take digestive enzymes with everything he eats in order to absorb the nutrients. The staff here were having a difficult time getting the enzymes into his feeding tube but after about 24 hours of head scratching they finally have it figured out. This makes me glad because now Jody can actually take in the nutrients he needs to grow stronger.
Yesterday the speech therapist stopped by the room. She immediately commented on how much better Jody was looking since his swallowing test this past Friday. This has been a sore subject for us. Jody was so messed up on Friday when he took that test, and you probably remember me telling you how he had to be laid down because of feeling faint. The therapist even mentioned that when she gave him the first cup he just kind of held it there like he didn’t even know what to do with it (I’m telling you, he was out of it). I had been telling people that I felt like he didn’t have a fair shot at passing the test because of the way he felt but they solely blame it on the transplant and laryngal nerve damage. The therapist seemed to think Jody had a good chance of passing if the test was repeated, based on how he looked then and now. It felt great to finally have someone agree with me. Convincing the doctors to order another test might be another story. Please pray with us that they would agree to this and more importantly… that Jody would pass! After imagining months of nutrition through a feeding tube I’m overjoyed at the slight possibility of Jody being able to eat even before leaving the hospital. However, even if he doesn’t pass a repeat test, then we’ll no longer wonder if he could have, had the circumstances been different, and we’ll embrace the feeding tube wholeheartedly.
Today Jody had his first bronchoscopy post transplant. This is a procedure that allows the doctors to look inside Jody’s airways and lungs. They checked the sites of anastomosis (where Jody’s new lungs were attached), cleaned out some of the mucous and junk in there, and sent more cultures to look for viruses, bacteria, and fungus. This is a routine procedure and Jody will continue to have these performed throughout the upcoming year. Thankfully everything looked as it should for one week post-op.
Jody’s two chest tubes are still in place. He will be so happy when they are gone because of the pain they cause him. Unfortunately they are still draining too much fluid. The doctors would like to see them draining around 100 mL or less before pulling them. Today Jody’s left tube had stopped draining all together and I firmly believed it was because of a blood clot inside that was blocking it from escaping. No one believed me. I told doctor after doctor, nurse after nurse, anyone who I could I told my theory. The area where I thought the clot was located couldn’t be visualized because of tape but I knew it was there. I was concerned about the fluid that would fill Jody’s chest, hindering his ability to breathe. I wanted to pull my hair out because no one was taking me serious, and I felt Jody would be the one to pay for it. I’m sure they all thought me extremely annoying, but I didn’t care. Finally I had the NP (nurse practitioner) come to the room for one last attempt to be heard. Instead she told me it was fine and that she understood that it was a new thing for us, but that they deal with these all the time, and I should trust them (I heard this from Dr. Shah the other day too, when Jody was so messed up and he could hardly even talk). Just before the NP walked out of the room Jody asked for a tissue to blow his nose. I’m sure it was God because when he did the clot that I knew was there broke free and instantly the fluid ran freely down the tube. Before this he had 20 mL of drainage, after the nose blow he had 300 mL. As of now he is up to 500 mL. All of this would have been backing up inside him. I was so afraid they would pull the tube thinking it wasn’t draining and he would end up needing to have it put back in (which is said to be a painful procedure). I thank God for listening to me when no one else would. No one ever acknowledged that I was right, and they don’t need to, but I hope that next time they will take me a little more serious when I express concerns to them.
In my last post I talked about Jody’s low blood pressure. They started to wean the blood pressure medicine but are doing it much, much slower this time. He is tolerating it well so far, and is able to get out of bed without feeling like he is going to pass out.
Jody is walking each day and every day he goes further and further. Today he walked two and a half laps around the nursing unit without any rest breaks (approx. 1500 feet). I’m so proud of him! It is still so amazing to watch him do this without any oxygen. At one point today when he was in bed I looked at the monitor and it was reading his oxygen saturation at 100%. That’s 1-0-0! It can’t get any better than that! Never in our married life have I seen his oxygen at 100%. Naturally I had to take a picture.
Now for an update on Jody’s vision, it’s still a problem. He continues to have blurred vision and spots, and has had this since the day of surgery (we’re not sure exactly when he first noticed it). It’s not something that he complains about but I see him struggling to read or look at things close-up, and wish it would fix itself. We pray that this resolves, especially since the doctors don’t seem to want to do anything about it.
One important aspect to Jody’s recovery and being prepared for discharge is education. When he was in the ICU and still on the vent the transplant coordinator stopped by and handed me a one-inch, three-ring binder. Her exact words were, “Here is the owner’s manual to the rest of Jody’s life.” Since that time we have been meeting the Jody’s assigned coordinator a little bit each day to begin learning life after transplant. Pray that we can absorb all the information being given to us so that we will be prepared come time for discharge.
Despite the fact that I have expressed some of the negative things we have experienced, we are happy with the care Jody is getting and feel very grateful to be here at this hospital. It’s surreal to think that the waiting and wondering is over and the worst part of this is behind us. I look forward to the progress that each new day brings, and I know that one of these days that progress will bring us home.