Monday started off with flu shots for all the kids before we headed out to Pittsburgh.
We were so happy to get into Ronald McDonald house. I can't tell you how much easier it is to be right there connected to the hospital, to have the support services of RMH, and for the kids comfort and sense of family while there.
Luke had a cold the whole week . This is his daily breathing treatment to help break up for mucous in his lungs. I was concerned about this cold, especially if it was Enterovirus. We don't really know what that virus will do to transplanted lungs. He had his nose swabbed while in Pittsburgh to see what virus it is that he was sick with. The good news is he is getting better.
His breathing tests were the best ever. So happy about that! We know his exercising is playing a big part in that.
Luke walked his furthest ever for his 6minute walk test. He wore masks while in Pittsburgh to protect others from the cold he had but also to protect him from picking anything new up.
There was the annual Steelers Rookie party while we were there. Luke wanted to get their autographs on the Steelers license plates they gave the kids. He wasn't feeling great so we didn't stay too long.
His chest xray looked good. That left diaphragm still is higher than it should be though.
He spent a day at the infusion center getting his IV medication that helps strengthen his bones. He does this every three months.
Thursday was a very busy appointment day. He even had to eat lunch in the exam room that day.
It started out with his transplant appointment which was long but went very well. His pulmonologist is very happy with his lungs and with how hard he has been working on exercising.
We talked about the reflux and he is concerned with the amount of reflux it could damage his lungs and cause chronic rejection. Luke had 186 episodes of reflux during his 20 hours of impedence probe testing in August.
Next we headed to his surgery appointment and it was good we were late because GI and surgery saw him together. I really liked having both the surgeon and his GI doctor there to discuss the options. They looked at his impedence probe together and his scans. He had a scan locally that they were concerned maybe his fundoplication wrap was too tight so things weren't getting into his stomach and the pooling at the end of the esophagus was causing most of the reflux. It was decided he would have a scope from above look at his esophagus and stomach. Since he had a cold we couldn't do it then so it was planned for Oct 13.
The girls coloring pictures for the RMH.
Friday we headed to opthomology and then we're going to head home. His eyes look good since surgery but he needs a new prescription of his glasses. Next time we are there they will check on that with his eyes not dilated.
Then this is what I love about Pittsburgh so much. His GI doctor called me to say he thinks he should have a simpler test to look if the fundoplication wrap is too tight. He wanted Luke to swallow a barium tablet and see how quick it goes from his esophagus to his stomach. We headed from his eye appointment over to radiology. While we were making sure insurance didn't require a preauthorization and trying to schedule it his GI doctor found us there and had already found a spot for him at 1 pm.
Luke had his upper GI with barium tablet then. He swallowed the tablet and it went right in his stomach... Nope not too tight. But he also drank barium with koolaid powder and it was clear he has some esopghageal dysmotility (his esophagus doesn't smoothly push down the food down upon entering it . So that isn't helping his reflux. Also the food goes into his stomach then lots comes back up very high into his esophagus. When he saw it on the monitor he said, "See Mom I wasn't lying." It happened a lot and would be like a yoyo just going up and down.
We headed to the caffeteria for a snack to get the yucky barium taste out of his mouth. They had a make your own pudding parfait we got. And then once again what I love about Pittsburgh... As we were eating his lung transplant doctor walked by and came and sat with us. He and Luke had a bit of a jokefest but we also talked a little about the latest test. I asked him if he thought Luke's esophagus, stomach, and intestine issues are something that have always been there and maybe part of what was wrong with his lungs (a bigger picture) or this is a consequence of transplant. He really feels it is a consequence of transplant. He ironically is talking next month in Nashville about post lung transplant and GI issues. He was explaining how many nerves that help control GI workings are in the areas that are disturbed during transplant. I am so thankful for all the amazing doctors who are part of Luke's team.
Then we went out on the patio outside the caffeteria with the other kids to run around a bit. While out there his GI doctor found us again. He had just gone down to radiology to look at the study and the radiologist. He said it was clear the wrap wasn't too tight . It was also clear he is having a lot of reflux come up from his stomach. It is also clear he has some esophageal dysmotility. That doesn't make the fundoplication any easier and can be problematic. He used to work at the center that does the most pediatric lung transplants in the country (probably world) and he said he didn't see such global GI tract issues with kids like this. Lots of stomach issues but not the esophagus and intestine. Luke never likes to follow the books. He is going to talk to the surgeon again and likely cancel the test on Oct 13 and just schedule his third fundoplication surgery.
To have these doctor take their time to sit and talk or come find us outside of appointments is why we know Pittsburgh is the right place for us. Especially now as insurance/companies dictate that doctors have to see more patients and get reimbursed less.I know the doctors hate just as much as we do that they are being told to see more people, spend less times, etc. Before going to Pittsburgh I was once denied help by one of Luke's doctors I saw on the floor he was on. I was told he wasn't on service that day and I had to find that doctor. That moment sticks with me to this day. I felt so abandoned in my quest to find out what was wrong with Luke's lungs and how we could make him better. Since transferring his care to Pittsburgh we have never felt that way. I have had many conversations in the caffeteria, in the hallways, and even a block away while taking a walk outside. It is usually the doctor stopping me to ask how Luke is and what is currently going on. And I see this with other families too. That is why the 6 hour drive is so well worth it, why we dont bat an eye at driving out there whenever we need to, and why we know Pittsburgh is home for Luke's medical care.
Luke collected toys for the birthday closet at Pittsburgh Childrens in honor of his 13th birthday and his 4th anniversary of his lung transplant. Thanks to the Bayada office, his nurses and former nurses, and his I Run4 runner Kris for all the great donations! He was so happy to give them to the Child Life department .
One hard thing is coming home when we know there is more to be done. Luke was very apprehensive to go home. He wanted to have his reflux fixed before we left. He is always anxious he may get a fever and have to come back . Knowing he will have to go to a local ER and be seen by doctors who don't really know him and know he will have to await his transfer to Pittsburgh is hard. This note he wrote then crumpled up shows how hard this is for Luke. He feels safe in Pittsburgh and knows all his specialists are there. Even though he has had some really tough things done in Pittsburgh he also knows they are the ones who care for him best.
Makayla lost some weight and is complaining more of her throat coming up (reflux) so back on the medication to stimulate her appetite and help her stomach empty better.
Carlines lung function tests have remained stable which shows the damage in her lung airways that happened in Haiti is not active but also not reversible. We don't know why some kids get this kind of damage after a respiratory virus so not sure if it makes her high risk to have further damage with another respiratory virus.
So thankful for all the specialists in Pittsburgh and their treatment of our children.
We arrived home late last evening. We will await the call to see when Luke's surgery will be scheduled. I am hoping it is a day that works with my schedule and switching work days because I still do not qualify for FMLA. This week is a week of appointments back home and a heavier work work to make up for Last week. Back to the at home school routine, unpacking from Pittsburgh and preparing for a visit from grandma and grandpa from CA. Of course the continued summer/fall clothes switch as well.
