Weekend - Went on lots of walks. Fun thing about the area is there are flocks and flocks of Geese all over the place. They probably are a bit of a nuisance but they are entertaining to watch.
3/29 Monday
Spent some time at St. Peter's to do blood work, urinalysis, stool sample - to be tested 2 days before procedure
3/30 Tuesday
Spent a few hours at St. Peter's again taking care of last minute preparations for admittance - including another COVID test for Lucas. (Came back negative)
Eli’s birthday is tomorrow, he was alive a year ago. Lucas’ procedure is tomorrow. It doesn't feel like a coincidence that Lucas is receiving Gene Therapy on his brother's birthday - who passed away less than a year ago from the same disease.
Because I was continuing to feel a lot of emotions that I didn't fully understand I wrote in my journal some intentional thoughts that helped me get my mind in a good place to be strong for tomorrow:
- Tomorrow could be beautiful - beautiful and peaceful.
- There could be big risks to the procedure, but those are unlikely to happen with the precautions and detailed planning they have done to prevent any issues.
- I can have peace as I remember the prince of peace and his healing power and as I remember God’s plan of happiness.
- This is a new chapter, a new adventure to begin with Lucas!
- Eli lived a full life and so will Lucas no matter what happens
3/31/21 Wednesday - Eli's Birthday and Lucas' Procedure
12:50pm - Lucas just went back. I had to leave him while he was still awake and as soon as the anesthesiologist picked him up and I started to walk away he immediately began to cry. It was hard to walk away while he stared at me with a super sad crying face. But he had just spent 30 minutes sleeping in my arms in the bed before we got wheeled down, so that was super sweet for us. I feel mostly at peace. I feel confident everything will be ok. But yeah, I cried a little when I left him. My sweet boy. I love him so much.
I am feeling a little shaky and nervous now, especially seeing him intubated and them using the little hand pump as they moved him, to keep him breathing. I just kept praying in my mind that the doctors and nurses would be watched over and prompted to keep him safe. I pray this treatment will have a good outcome.
They moved him from OR where they intubated him to MRI and then they will move him after the MRI to ct/radiology where he will have the procedure.
I think I am a little out of it, because when doctors and nurses talk to me, explaining everything that they are doing and everything that is going to happen, I don't really hear what they are saying anymore. I feel a little foggy brained. I'm going to try some deep breathing and progressive relaxation/meditation.
A couple of chaplains came down right before the procedure. One of them prayed with all the doctors, nurses and technicians. It was a beautiful prayer expressing confidence in the doctor's ability to do everything well and precisely and expressing glory to God when everything goes well. I was able to look at sweet Lucas and be next to him as we prayed right before the procedure. They had someone from genetics sit with me to make sure I wasn't alone.
Someone came out and just updated me. Everything is fine, they've taken out the fluid, (they took out the same amount of CSF fluid that they put in with the drug to make sure it was balanced) but the process of placing the needle appropriately is kind of painstaking, they are checking placement within millimeters.
Someone just came out and told me that they have chosen the path and it all looks good. They are ready for the injection now. It shouldn't be more than a half hour longer. He said that those blood vessels don't move when the child isn't moving, so everything should be good. (Hitting a blood vessel could cause a stroke) He just took his time and really made sure the placement was correct.
The procedure went beautifully, there were no issues and it was a team effort between the doctor performing it and his associate doctor who had performed this technique in two children previously and was the one who trained him on the technique. They brought me in right after and showed me an image scan of his brain to show me where they placed the needle and how it was successfully administered into the Cerebral Spinal Fluid in the Intra Cisterna Magna and showed that it connected successfully with the surrounding areas of the brain. It was amazing.
The rest of the day and night were good, but long and tiring. Lucas did well, he was just groggy and out of it - also a bit of a handful. It was a good thing I had his stroller - I could put him in there where he was safe and strapped in, then I would lay it back with his lovie and pacifier and then he would relax and sleep for periods of time. I made sure to try to sleep myself whenever he was sleeping.
We are all pleased with how Lucas was doing. His throat is sore and he is recovering from general anesthesia, but no other issues.
4/1/21 Thursday
Lucas is acting much more normal today. Lots of doctors and nurses visiting - took blood today, stool and urine samples - did an EKG (the stroller and wiggles was a lifesaver - he almost ripped them all off, but then calmed and we got it done!) It was a day of patience and endurance (Lucas did not like being cooped up without being able to move around since he was attached to the monitors) but also being well cared for. Our nurse allowed him to detach for a little while and let me push him around the PICU in his stroller for a little while since he was acting more normal.
4/2/21 Friday
Last night was much better then the first night. Lucas slept in his stroller for part of the night and with me the other part of the night. After they did his vitals this morning, they let me detach him and walk around the room. I cleaned it all up nice for him. He has been much happier today, enjoying some books and toys and exploring a little.
He is on steriods for 30 days before he will gradually come off to combat any potential anti-body development against the AAV virus - drug. So I just have to remember to give that to him each morning and mark his seizure journal each night.
Around 3:30pm Dr. Day-Salvatore came by to make sure we got out the door by 3:41 - which was the time he arrived in PICU two days before. We followed the clinical trial protocol for Lucas to be observed for 48 hours after treatment.
We gathered everything and said goodbye to everyone - all the nurses & technicians were amazing with Lucas! They were so patient, kind and loving toward him. It was a great feeling to be leaving and a momentous occasion with him having received Gene Therapy via Intra-Cisterna Magna which has been performed on pediatric patients only twice in the very recent past in another clinical trial and the first time on a child with GM1 Gangliosidosis.
I’m so grateful for the care he received and so grateful he is doing well with no side effects so far!
What faith! And what endurance to care for a very young son through all of these procedures and discomforts. You know what's best for him, but he's too young to understand the great purpose behind all of these needles and tubes and machines. I guess that's similar to why we trust our Heavenly Father too--we don't understand that the pain and discomfort and confusion in our personal lives will lead to a glorious future. But He can see it, even while we just have to continue to trust in His unfailing love and perfect knowledge for us. Just like Lucas is trusting you. Best wishes--we continue to pray for Lucas and your whole family.
ReplyDeleteWow, what a week! You guys are amazing! Hoping his body takes well to it all! You are in our prayers!
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