Ok, so I have been so overwhelmed with Paul being in the hospital, trying to spread myself between work, Eden, and Paul, that my blog has been neglected. So it was a good thing that Paul accidentally posted on my blog about his most recent admission because I was obviously not able to get to it. My favorite motto lately has been "All I can do is all I can do, and all I can do is enough!" Now that Paul is home, life has settled down and is a little more enjoyable. Our families have been so amazing at helping us out. I couldn't do it all without them. Thanks to all the rest of you who have persistently offered to help us too. We love you guys. His recent bout of severe exhaustion had us all worried. He was too tired to even read or watch tv. Going to the restroom was a feat in itself. Paul was feeling just terrible and it was affecting him mentally too. It was hard for me to watch. We were relieved when some options became available but only if they could transfer him under the care of pediatric cardiologists since his congenital heart problems were not well understood by regular cardiologists. He now will be at PCMC for all of his care until after the transplant. So at this last admission he was given more protein infusions and a blood transfusion. The blood was of no benefit because his vitamin E levels are so low and his spleen is so congested that his blood cells disintegrate rather quickly. His blood count is terribly low and that is likely part of his fatigue. Hopefully some high dose vitamin E supplements will help a little. A stent was place in his right pulmonary artery that was being smashed from his enlarged heart but the attempts to revise his pacemaker system was unsuccessful. Despite that, I have noticed a slight improvement in Paul and he is having some better days! Yeah! Also, a PICC line was placed and he is receiving a continuous medication drip to help his heart function. This also moves him up on the list so we are happy to shave some waiting time off this year, especially with his ongoing fatigue. We are grateful for all the good care he has received from both of the cardiology teams and are at peace about everything. It is a little strange having Paul at a children's hospital but they have adult heart patients all the time. Eden obviously likes the hospital too. In the picture here she proudly models her fake PICC line with dad (along with her ratty princess dress that she wears 24/7)!! I recognize that wearing her princess dress is fight for some consistency somewhere since her life has been far from routine lately. I just wish I could include a washing machine cycle to the daily routine without the battle!!!!!!
2 comments:
I so wish I was there to do your laundry or whatever you need. it is so hard to be away right now when we so want to be with you guys and help. all we can do it pray and that happens in every prayer (if not Garrett reminds us). Lynnette please know that even though we don't talk much you are in my thoughts so much and I pray for you to have strength and courage as much as Paul! Love you!
Lynnette, I'm glad to hear there is a little progress. Paul is home that's great! And moved up on the transplant list, Awesome! The PICC line probably is a big help. I hope it continues to look better. Love you guys Nanci
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