This weekend was focused on healing, pain management, and learning how to take care of Malachi’s new body. Malachi had several episodes of breathing issues over the weekend, earning us a spot in the PICU until this afternoon. We are now back to “the floor” and in our 5th room for the month.

For those of you who have sent mail, we are getting it still even with the many changes. It just takes longer for them to find us. I wouldn’t recommend sending any more mail at this point as we are desperately hoping to go home by next weekend.

The ICU can be a scary place, but honestly it is my comfort place. The care ratio there is usually 1 nurse for 2 patients as opposed to the floor’s 1:4. I slept better there than I have all month, feeling secure that there were always eyes on my son. It isn’t that the nurses there are “better”, but the monitoring opportunity is better. His seizures increased in the ICU and he had some scary desaturations that we couldn’t get under control, even with 6 liters of of oxygen AND blow by. He definitely needed the higher level of care. And having a very present teammate to help me with his post op issues brought me so much peace.

It was a much needed reset for me, mentally and physically.

The wheelchair company came out and re-fitted Malachi’s wheelchair until we can get his new one ordered. It is genuinely shocking how much he has grown from this surgery. Even the little things, like his g-tube now being several inches higher, has thrown me off my game. He has such a long torso now, it truly looks like a different body.

I have a few photos of Malachi to share but he just hasn’t been himself and I wouldn’t want my post-op self posted on the internet so I am trying to be a thoughtful mother and post ones that were taken today after his nice head washing yesterday.

Malachi’s bloodwork triggered the alarms for a sepsis warning this afternoon so we will be monitoring his bloodwork closely over the next few hours to see if we are dealing with an infection issue. I am really hoping for a good report this evening after labs are drawn. We can’t handle any more hiccups or surprises.

We did travel down for x-rays Friday and the before and after transformation is pretty impressive.

Malachi is still in a lot of pain and definitely not anywhere near his baseline. He is able to tolerate the pain slightly better, only requiring heavy medications a few times a day and managing on Motrin and Tylenol the rest of the time. He was able to get his catheter out, his art line out, and several of his ICU leads. He was also weaned off of oxygen today, so one less tube there. He still has an incision vac (which we will come home with) and two drains coming out of the base of his back (which we will likely still come home with).

I am also having to re-learn how to hold him. Before he was very floppy so we supported him in a unique way. Now that he is rigid it changes where I can safely hold him and even the minor things like diaper changes are a thinking process.

He is starting to develop two pressure sores where his bony hips are pressing against the mattress. We REALLY need to watch these and prevent them from becoming true wounds so he is re-positioned every two hours. Complicating things even more is that plastic surgery doesn’t want Malachi laying on his incision so we are doing a lot of side-lying. And the bottom half of one leg is very much crooked now, which seems to be a new issue and likely due to the fixation in his pelvis. I will be asking them about this in the morning rounds!

He has been very sleepy and I don’t blame him. His body has been through so much. We wanted him to rest so we made the decision for Jake and Levi to stay home for this weekend and hopefully travel up later this week when he is feeling more like himself.

We are starting to think through the best way to care for Malachi when we get home and we have settled on turning the living room into a makeshift hospital room at least until we can get him drain and tube free. Jake is on it, preparing the space for him. It is going to feel so good to be back home! And to be together. We were able to use some of the funds people so generously gifted us to stockpile all the medical things we will need to keep Malachi comfortable and healing at home. Thank you so much for removing that hesitation from us and making it easy to prepare for the next leg of this journey.

Prayer needs right now are pretty easy for me to rattle off…

Pain management, equipment stability, no sepsis or any other complications, no pressure sores.

And I have a big one that is stressing me out more than it should…but please pray that we come home bug free. We found another creepy crawly (not sure that it was a bed bug but pest management said it could be a young one) in our 3rd room and their solution was to put a gown protocol on the door to protect the staff. I am horrified at the persistent issue and reactions here. I understand hospitals are frequented by lots of walks of life, and no one chooses to bring bed bugs in, but oh how much stress that can add to families like ours when we leave with a post-op child. They offered to treat our items again but that didn’t happen as we had surgery the next day. The items were bagged up and are now in my car and I am terrified that we will bring something home with us. I never laid on or sat on that couch and I have kept all my items as far away from the beds as possible. But my imagination is running wild and introducing a whole new stress.

And please continue to pray for our weariness as a family unit. We all miss each other desperately. We all crave normalcy again, and simply being under the same roof.

Regardless of when we leave we will have to be back multiple times in the next two weeks for follow ups and drain/vac removals. That’s a lot of ask for Malachi’s body, driving 3 hours each way on a light traffic day right after surgery. While we are eager to be home, we also want to be wise about minimizing our post op traveling, even if that means sticking around here a bit longer than we would like.

Thank you for checking in on our boy. He is such a warrior, sometimes it takes my breath away. And thank you for praying for him. Sometimes I don’t even have the words to speak to the Lord…it is an overwhelming prayer for a medical mom. I find so much peace in this verse.

Romans 8:26-27 “In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans. And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for God’s people in accordance with the will of God.”

This is a wordless groans season for me, and I am incredibly thankful for the Holy Spirit, and for friends interceding on Malachi’s behalf.

Sincerely,

Leah