So the surgery went really well! The doc said everything was pretty straight forward as far as hernias go and she was also able to "snip" as well. Shane was in a good deal of pain in the afternoon and had tRouble finding a comfortable position. However, Tom came in the evening to trade off and take the night shift. Shane fell asleep in the evening after more Tylenol and also something for nausea. He had trouble keeping stuff down for a few hours after surgery and didn't want to eat or drink--- we asked for the anti-nauseant and Tylenol since we were unsure exactly what was bothering him most. both seemed to work and after sleeping a couple hours in the evening, he ate and drank beautifully, slept well last night and feeling pretty much himself this morning. Olivia and I Re here with him until DISCHARGE about noon! Yay! we feel like this is a big hurdle we've jumped. Praying he continues to heal well and no complications. He has no restrictions cuz they say kids are good about self-limiting! Not like adults who usually do too much!
So headed home soon: )!
With hernia surgery looming and scheduled for his birthday :(, Shane celebrated Wednesday night. We ordered Chinese take-out. Lauren made her fabulous Banana cupcakes and mom made homemade vanilla frozen yogurt...."yummy" was Shane's response!! He was right! He opened his presents with a bit of coaxing from Olivia...he actually had no idea what to expect and why paper was all over the boxes. It was fun to witness. He got a Playmobil Zoo set which was perfect as we went to the zoo on our hiatus from hospital visits. He also got a big fire truck with Billy Blazes that "shoots" water bombs(?). Wonder what Firefighter Phil (his brother) thinks of that...hmmm? Olivia loved it but, of course, the water weapons were the draw! As we left this morning for the hospital, her dad asked if she wanted to ride along. "No, I'm going to have some breakfast. Can I play with Shane's fire truck?" Okay...priorities of a four-year-old!
I am currently at the hospital waiting as Shane has his hernia repair. He did much better than I expected this morning as we checked in. The staff here noticed it was his birthday and gave him a present! A big car from The Cars ovie---he loved it! Pastor David was already here when We arrived, ready to encourage and pray with us! We so appreciate our wonderful church family for their sincere and caring help for our family. Friends too have been great! Making sure we are not overwhelmed in the process. I t so amazing to us...we knew what(well, sort of) we were getting into adopting Shane. However, no one has given us even a hint of "you asked for it" attitude--- not sure why we feel like they ought to but everyone---absolutely everyone---has been so very supportive! And we are so very grateful!
Please continue to pray for our little guy. The surgeon was not sure she would tackle both sides of the hernias today ---concern about too much pressure on the other internal parts at once---or the circumcision---not sure it is critical at this point. Of course, this mom's heart is wanting as few procedures as possible as long as it is in his best interest. Update on that to follow later today...and birthday pictures!
After being in the hospital for just over a week, we are glad to be home!! Shane had high fevers for only about 24 hours from Tuesday to Wednesday after his heart cath on Monday last week. They took seven sultures in all with only the second showing any positive action. But...even though all of this developed while IN the hospital, docs don't take chances with heart kiddos. Saturday. the VAT team tried three times to put i a PICC line with no success. However, yesterday they got it in and we came home last night!! Yay!! Shane has to receive IV antibiotics for 6 weeks to ward off endocarditis----even if he really has no infections---as a precaution. He currently is wearing a "little" pump and meds on his back which infuse 24/7. However, we are going to change that so mmommy can administer the meds 4 times daily. There are pros and cons to both ways. The cons to the 24/7 method seem to outweigh the more labor intensive method.
24/7 Method Pros: Change out the meds once a day with one flush and new pump batteries Have bag will travel
24/7 Method Cons: always attached to the backpack backpack with stuff weighs 5 lbs---a fifth of Shane's weight Stress to both hernia and heart with the extra load Surgery on hernia Thurs--no carrying of pack..hmmm
Obviously the other straps us to a schedule(4 times a day for 30 min) and more labor intensive med administration BUT it frees Shane to continue improving his walking/running free from a line and the added weight. He will still put the small med pack in his backpack and run around but that is a fraction of the weight!
And yes...our boy is scheduled for hernia repair this Thursday...his birthday : (.
I've always loved roller coasters! The excitement of the wait. The thrill of the climb up the hills. The anticipation of riding the crest. The rush of flying down to the bottom. I have to say, and I'm sure most of you will agree, that life's roller coaster rides do not often provide the same satisfaction.
This week has been and continues to be a ride! Shane had three blood cultures drawn of which the middle one grew something. then we were told that it was a false. surgery was re-scheduled for Friday. Now we are told that it indeed did grow something-- a staph strain. No hernia surgery. Maybe in 6 weeks. Infectious Disease drew 4 more cultures to stew for the next 48 hours. Yes..that means we are in until Monday. But the docs are talking about surgery late Friday or Monday now...hmmmm. We'll have to do antibiotics for 4-6 weeks though to prprevent endocarditis. I asked the cardiologist if we'd get a pic line. Yes...much better than an IV for long term. so we'll get to go home after that right? "Potentially," he says. what? Potentially?
We'll be revisiting that one cuz I think I just stepped off the ride and I feel a bit dizzy!
Shane came through the heart cath like a champ! The doctors and staf are fabulous---thoughtful and caring. Although we don't know definitively the results as they will be interpreted by the cardiac sureons, we have both good news and not-so-good news. The good news we really had known but is confirmed that Shane has his pulmonary arteries---lt and rt. They ay're in basically the correct position aqn connected. However, because of his age and the very low pressure in his lungs, there is possibly damage. Won't know how much, etc until his surgery how this will affect him. His collaterals are short and wide open---good for him now---not so good necessarily in the repair. Much better is these vessels had been long, narrow and even coiled. This creates the needed resistance to pressurize the lungs---at least, I think it is something like that with my limited knowledge about heart anatomy/issues. We are learning quickly! Short answer...this can possibly result in pulmonary hypertension which can be difficult to control. I am clinging to one thing in particular that the cath surgeon said. "This does NOT mean that Shane will respond with PH once repaired. I've seen cases where this doesn't happen. It could go either way." Now you know our prayers are definitely along those lines.
In the near term, we are"stuck" at CHKD. After Shane's cath, it was decided that we would remain admitted for hernia repair on Wednesday. Of course today he is running a fever : (.
We were told that it is common to run a fever after a cath but don't know if it will affect surgery.
Our prayers of urgency: Fever to go away
Hernia repair to proceed with ease of recovery
That the surgery time will be early...we were told since he is an add-on it will likely be late afternoon--how do you tell a 2 y/o no food all day...hmmmm
Oh, also prayers for a sweet little boy who was in the room with Shane over the weekend. He has sickle-cell anemia and getting transfusions and iron chelation. He was one of the most thoughtful 8 y/o I've ever met. Asked many questions about Shane and adoption...gave Shane a juice box and even a picture he colored when we left : )!