Well the journey continues and it seems like we started back over again. On April 23rd Grayson was transferred from EIRMC to Denver. The doctors were seeing increased pressure in his heart so they started searching for a doctor who would perform the ASD closure. The doctor they found in Denver was eager and ready to do the procedure.
When we got to Denver we expected them to run their own tests and make sure everything was ok to do the procedure. This was not the case, we got here and the procedure was already scheduled for the next day. Dr. Miller, the one who performed the closure, came in and explained how the procedure worked and showed us the device that was going to be placed in his heart. He told us that they were doing the procedure in reverse by placing the device and seeing how it affected him rather than doing a bunch of tests to see the same thing. In the end I'm glad that's the route he took. He made us very at ease with everything and I was excited to get it over so Grayson could start to get better.
The procedure went ok, the doctor came in and told us the device was in place and he had been watching him to make sure he responded to it positively. He was a little worried that it may not be the best thing for him. I guess I should explain that the device is hooked to a cable and inserted through a catheter, once the device is in place they have to release it from the cable. So he was watching everything before he released the cable. It is easy to take the device out while it is still attached, once it is released it is an open heart surgery to change anything. They put him on nitric oxide to help relax the blood vessels in his lungs. His body was used to the extra blood flow so suddenly stopping that caused his lungs to struggle. For anyone who would like to see a demonstration of the procedure check out this link and scroll to around the 20 minute mark. It is actually really cool to see, it's all done on a plastic model but you see the actual device they use.
https://www.akronchildrens.org/cms/transcatheter_repair_of_atrial_septal_defect/#.U1H8wr_SjLE.facebook
The doctor decided it was best to release the cable and leave the device in place. The next 3 days was the absolute worst for me. The first time that I really broke down. It was so hard to go from our baby that we could hold whenever we wanted and eating from a bottle, to being ventilated and on more drugs and machinery than he ever had been. I was really scared. The doctors had warned us that some babies respond this way, Grayson's body was used to working with the hole in his heart, take that away and suddenly it needs to learn how to work properly. We were told that the first 72 hours were usually the worst and then they start to pull out of it. These doctors know what they are doing because it was right around 72 hours that we could begin to breath again and see him starting to get better. Good thing because I needed to get back to work and I wasn't about to leave with him in that scary condition.
The biggest concern for the doctors was he started having small seizures, his legs and arms would start twitching. His whole body wasn't shaking or anything like that, just an uncontrolled leg and arm movement. But it was happening quite frequently. They gave him some medicine to see if it would help to relieve the seizures and then they did an EEG to check and see if it was indeed seizures he was having. They confirmed that it was and treated him with a couple different medications. They did a head ultrasound to see if they could see any major issues, like a brain bleed. There was anything noticeable on the ultrasound, they really needed an MRI done to see what was causing the seizure activity but he was hooked up to way to much machinery to make that possible. They repeated the EEG to make sure he wasn't having sub-clinical seizures (seizures that you can't see any movement physically but the brain is still having the activity) it showed that he was and they upped the dosages. Once they got them under control they repeated the EEG a couple weeks later and they reduced him down to just one medicine. They talked about letting him grow out of the medication (meaning they wouldn't weight adjust the dosage as he got bigger). We just talked to the neurologist yesterday and he decided that because of the severity of the seizures in the beginning he wants to wait until August to repeat the EEG and then let him grow out of the medication. Hopefully he can grow off the medication and there won't be any more seizures.
He stayed on the ventilator for about 10 days and then went to the high flow oxygen at 5 liters. The machines slowly started to decrease and he was able to get back into clothes and into a crib again and back to our baby we remembered. It was about 3 weeks from the time of the procedure to being back to where he was before the procedure.
Once the machinery (picture above) was gone and he was stable again they did the MRI. They were thinking there might have been a clot from the procedure that caused a stroke or a minor bleed causing issues. They didn't find anything like that but they did find an area of the brain that was damaged. They couldn't tell when the damage had occurred just that it had been there for awhile. It could have happened at the time of the procedure or it could have happened in the womb or anytime in between. There isn't any way for them to know. The big question we had was how is this going to affect Grayson long term, is he going to have mental disabilities or problems with movement, etc. They couldn't give us any answers to that question, the area the damage is in controls lots of different things so there is no way of knowing. It is a matter of watching him grow up and then seeing if anything develops, it could be that nothing is affected. Right now he moves and acts like a baby that is a couple months old (his corrected age). So, so far so good.
Mothers day weekend Callie and I got to come to Denver for a visit thanks to some good friends and family who helped us get plane tickets and a rental car. The nice thing is that here in Denver after flu season is over siblings are allowed to come in the NICU. So Callie was finally able to meet her brother and hold his hand. Mom was a little worried because Callie had a cough that she was just getting over, so we didn't spend as much time as Callie wanted and she wasn't able to hold him like she wanted, but she was still so excited to see him. We were able to go to the zoo and the nature and science museum while we were here.
While staying at the Ronald McDonald House all you have to do is present your badge and you get in for free, so nice that they do that for families.
I can't say enough good about the Ronald McDonald House and the support that they are given. We are able to stay as long as we need and everything that we need is provided. Volunteer groups come in and provide meals for the families, laundry room is provided along with detergent. They have fridges and cupboards with food in them. Next time you are at McDonald's drop some change in the donation boxes they have, it is an amazing organization that is helping families around the nation. Plus if you live in an area that has a house you can volunteer to provide a meal or any other items, they have blankets, toiletries, games, movies, anything to make life a little easier during a stressful situation. There is talk of putting one in Idaho Falls, if they do I am looking forward to cooking up some grub for some worthy families.
Now to the recent news, Grayson is 11 pounds 2 ounces, he has started to eat better and better every day. Out of 8 feeding yesterday he took 6.5 of them all from the bottle and he has started out really well today. They did some tests to see if they could take him of the medication for his pulmonary hypertension however the echo that they did showed the pressure in his heart was still slightly elevated, so they are going to wait a little longer. It is still looking extremely good and he has gotten much better. A little longer and they will be able to get rid of the medication. Monday they are planning on taking him off the high flow oxygen and seeing how he does on wall air (he can come home on wall air). If he does good on wall air and gets to the point where he is eating all his feeds from a bottle, he will be able to come home. They are also going to do his circumcision sometime next week, better to do that while he is still in the hospital so they can give him some extra oxygen if he needs it. So how long until he comes home???? It's getting really close, he can come home on oxygen, depending on how much he is requiring they will probably send him home on a monitor too, mainly because if he was to knock the cannula out of his nose during the night he doesn't have any reserve and wouldn't last long before things got bad. I think it will give Darcie the extra peace of mind to have it anyway. I am thinking that the circumcision may give him a little bit of a slow down and bump his oxygen need up, so that will be next week and then the week after we will be making the long journey home. This is my prediction and hopes, I really don't know and neither do the doctors. It is all up to Grayson, and trust me we keep trying to talk him into going home, he just likes the attention he gets here I guess.
Enjoy the little video I took yesterday. Sorry for the poor quality, the higher quality one that I took wouldn't work.
1 comment:
Thanks Brandon for posting such a thorough update! Your family is an inspiration to many. Good luck to all 4 of you and we look forward to your (whole) return to home.
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