It was a looong day for Adam but
he. did. great.
So proud of this rock star- he is so amazing. Thank you for your prayers- they *truly* made a difference!
We weren’t sure what to expect today, we packed overnight bags because we thought there might be a chance he would be admitted, but we woke up and his chest looked better than yesterday, so that gave us some relief.
His incision will start to heal, I will exclude most of those details, because they are pretty graphic and Sarah assures me I don’t want to know what they had to do… but just know it’s better. Essentially Adam was having a reaction to the internal stitches and they had to be taken out. Adam is doing fine. Adam’s surgeon and his team have been amazing the last few days. We are incredibly thankful for them. We are back in the Cape and didn’t have to stay at the hospital.
Today was also his previously scheduled post-op testing. Which in itself is a lot for Adam, but again, this little 2.5 year old was such a trooper.
We were able to get an EKG (which is normally cancelled because he just screams), we got a calm BP and HR which is also important. X-rays looked good, he sounded good and his 02 numbers have increased (even since last wk). Seeing his 02 steady at 90 gives us goosebumps- this is an enormously wonderful thing for his body….a much bigger deal than we could begin to explain. Each of his days will be better because his oxygen is higher, we are so thankful.
So now- we can think about heading home ? and we will make sure Adam gets to go do a BUNCH of fun things- he absolutely deserves it. All he has been asking to do since we got here is to go see Mickey. That’ll be on the top of our list.
Please keep praying for this boy. His incision really has issues. After sending pics this morning the OR PA called concerned and tonight when Sarah sent her pics she had to contact the surgeon. We’ll now see both tmrw and they’ll decide what to do. He still has 2 stitches exposed, an infection and the bottom of the incision has a large opening- the surgery was 3.5 wks ago- this should be completely healed and looking great. This poor boy has just been through so much. Idk what they’ll do, if we’ll be re-admitted or what but this definitely will add to his recovery. Please, please keep praying for him (and the major tests we have tmrw too!)
The good news is he is as goofy and energetic as ever and he doesn’t have a fever, but this incision is a real concern.
Adam has internal stitches that keep his chest closed. The stitches adhere to something inside and dissolve. That didn’t happen. They said near the knot sometimes it’s tricky. Because it’s out and exposed issues can come up because it’s not completely closed off.
A pus pocket developed underneath. She squeezed it all out, cleaned it with a solution that sterilizes and covered with gauze. We will clean twice a day and start antibiotics.
We will be back Thursday for a checkup and his tests.
It’s very good that we came. Once again, moms instinct was right. Adam screams and screams anytime he’s getting checked out, and especially anytime his chest is exposed. So thankful that she is there, as hard as it is.
Waiting for them to discharge.
Per doctors recommendation (based on pics we sent in this morning) we brought Adam to the ER at Boston Children’s Hospital to have his chest looked at. Prayers that there isn’t an infection. He is in a room and waiting for the cardiology team to come down.
Monday we drove to Newport, Rhode Island. Really beautiful drive. One of my favorite places so far.
We spent the rest of the week exploring. Had to go back to Boston on Thursday for and unexpected visit. Adam’s incisions were not healing well so Sarah made sure to get him back to get stitches removed and checked out. I haven’t said it enough but she is amazing with everything related to Adam and the kids! She’s been unbelievable this trip. Adam is doing much better now.
Random pics of our adventures so far.
Adam has been in the hospital for 8 nights now, getting stronger each night. Yesterday he had an X-ray (looked great) and echocardiogram (inconclusive, pics weren’t clear). The doctors have ordered a sedated echocardiogram today at 1pm. They are looking to see how his heart function is. The echo they did right after surgery looked great, so we want to see the exact same thing today.
His oxygen is off now and he is hovering in the low/mid 80s. We need him consistently above 85. Last night he would dip into high 70s but bounce back after a minute or so.
Sarah is being awesome, as usual. Has stayed in the room with him almost the entire time, and has gone with him to his tougher treatments, like getting the tubes and wires out… I would have hit the floor passed out. She is such an amazing advocate for Adam!
I’m just trying to keep the ship afloat for Carson, Grace and me. We are checking out of the hospital housing today and moving to a hotel in anticipation for Adam getting released soon hopefully. Those two have been really great considering 10-12 hour days in hospital rooms. Looking forward to being able to have some fun soon.
They removed the chest tubes and pacing wires yesterday afternoon. The only thing he is on currently is oxygen. They have weaned that down and the next step is to hopefully remove it. His O2 is staying in an acceptable level so he should be able to tolerate it.
He got some good rest yesterday after they took everything out. His appetite also picked up a little and he was able to eat some Mac and cheese.
We went back to the playroom and he met his little friend again. He played with her in the playroom on Friday too. Her family came all the way from California for her treatment. Adam and her had so much fun playing and she really perked Adam up! Her dad stopped by our room in he late afternoon with balloons for Adam because they were discharged and get to go home ?.
They sent another dog to visit Adam, this time a small one that could get closer to him. He loves having them come visit.
Today should be another good day. The hospital gets really quiet on weekends so we will probably just try to get Adam more active. We are allowed to take him off the floor to walk around now, so a change of scenery will be nice for him.
An echocardiogram is scheduled for Monday. I think we are getting closer to a discharge date. The early estimate was Wednesday but we don’t know for sure.