In less than two weeks, Tristan will be admitted to the hospital for his bone marrow transplant.
About a month ago, I got a call from the BMT coordinator. She said that we are ready to move forward with the bone marrow transplant. Jocelyn has reached a weight the doctors are comfortable with. A week ago, we signed all the paperwork stating we are aware of all the risks that come along with this process and we decided on a December 3 admittance date.
These past few days we have spent a lot of time prepping and ensuring that both children are healthy enough to proceed with this procedure.
Prep Day 1 – Tristan saw the dentist – all good there.
Prep Day 2 – Tristan and Jocelyn were tested for common cold and flu viruses – all good there. Tristan had an x-ray done due to recent coughing – all good there. Tristan and Jocelyn had blood work done – both did great. Lastly, Tristan had a CT scan – two things popped up.
They noticed an enlarged lymph node in his lung. It’s a little bigger than they would like – but nothing too alarming at this point. They also found possibly early pneumonia. I knew this was coming. I had a hunch. Tristan didn’t have a fever but for weeks I kept saying I think he has pneumonia again. But the doctors would listen to his lungs and the lungs would sound clear and he didn’t show any symptoms other than coughing. This is common in CGD patients, so for the doctors this wasn’t too alarming when the early pneumonia showed on his CT. He is currently taking an additional antibiotic to combat this so hopefully he can still move forward with our planned admittance date.
Prep Day 3 – Tristan had a GFR done. GRF stands for glomerular filtration rate. Basically, it makes sure his kidneys are functioning properly. The test is ran by injecting an extremely small dose of radiation by IV and laying him under a machine similar to an x-ray machine. The actual test wasn’t bad but the IV part sure was. The nurse blew his IV three times. It was hurting Tristan so much and I was so frustrated, I had to request we take a break. Poor guy was worn out! Tristan fell asleep soon after I picked him up off the hospital bed. After a 20-minute break, a peds nurse was called down. Unfortunately, we had to wake Tristan from his sleep but at least she was able to put in the IV in one shot. Later, he had an EKG and echo. All three tests came up good.
Prep Day 4 – So much blood! Tristan and Jocelyn had to get a ridiculous amount of blood work done. Tristan had over 40 tests and Jocelyn didn’t have much less. We requested the blood be drawn over two days. Tristan took it like a champ. He always cries just before the poke and during the poke, but after a few minutes he just watches everything. Poor Jocelyn though. My baby girl had to get poked three times! And they were fishing for the vein under the skin. Oh, I hate seeing that! I know that sometimes it’s just hard to find a vein, but it’s hard to see my baby in pain. Results on these still pending.
Prep Day 5 and 6 – Babies need a break! Although more testing needed to be done and more blood work was necessary, we had quite the eventful previous four days, we decided we would resume on Monday.
Prep Day 7 (today) – More blood work. Both babies had to finish up their blood work. Both were poked a few times. But today was much easier than Friday. Thank goodness. Jocelyn got her second flu shot which will protect her but also protect Tristan once he takes on her bone marrow. (Isn’t it cool how that all works?) Tristan also had his hearing test and the audiologist found that his hearing is normal.
Now it is the night of prep day 7. Tristan is still fighting his pneumonia and Jocelyn has thrown up twice tonight. She’s never thrown up. So we’re concerned. Tristan has also had two fevers since we started preparing for admittance. He also has had three pee diapers with little blood spots. Sorry if this is TMI. But we’re not sure what is going to happen over the next few days. We’re worried and anxious.
We’re basically on house arrest. We are trying to keep the babies as healthy as possible. No friends or family over. No unnecessary outings. No Disneyland (obviously). No Long Beach Aquarium (obviously). So many antiseptic wipes. So much antibacterial foam cleanser.
Any little thing has us on edge. The great thing is we are confident in our babies’ doctors. We know that they won’t push for the admittance date if either could possibly be too sick to undergo the bone marrow transplant process.
I’ll be sure to keep you updated. Just a few more appointments to go. The countdown continues…