AT A CROSSROAD

It's another Sunday night at Children's Hospital. Tonight marks 4 weeks at Children's Hospital for Jacob. It has been a month with ups and downs. From uncontrolled seizures to tummy problems that I never could imagine. Stool output that is out of this world. I can today analyze stool color, consistency, and smell like never before. I have a pretty good guess, if we're looking at a diaper under 50 ml or if we're dealing with a 200+ ml diaper. I always cross my fingers that the diaper will be smaller than my guessestimate, always making sure that the nurse is not keeping any wipes in the diaper that might make it a few mls heavier :- I can by now declare that I am a stool control freak when it comes to my son!

Thanksgiving truly gave us hope. We had a wonderful holiday all four of us, and there was hope that Jacob finally had turned a corner. He had had two good days in a row, and mysteriously the poop had faded away. The steroids were doing their job! As much as Jacob is not a great candidate for steroids, we had found something that had put the output to a stop.

Or so we thought...after Jacob had a great visit with our friend Camilla and her kids on Friday, the stool came back...not one diaper, multiple ones...Yesterday was the same...with every diaper change I felt my hope sank lower and lower. The steroids were probably not working after all...Today has been a little bit better, but we're nowhere close to where we were on Thanksgiving.

On a positive note, Jacob seems to be feeling pretty well. He is up in his wheel chair multiple times each day. We read, listen to music, and do crafts. We work on his range of motion and stretches every day. He is so stiff! His physical therapist would not be happy, if she saw his hamstring stretches these days...You can loose so much flexibility from simply laying in bed for a month...Jacob is completely weaned off his bi-pap at night, and we're very close to have weaned Jacob off his oxygen during the day. If it wouldn't be for his tummy, Jacob should be home by now!

I know we're at a crossroad now. We have tried all the things GI told us we could do. We have tried multiple medications, and we have tried steroids. I am sure they will stop steroids tomorrow. If they don't see drastic results with the steroids, they can't justify keeping them on board due to the side effects.

They have started Jacob on pedialyte tonight, and we will see if he tolerates it or not. If he tolerates it, they will slowly, slowly start feeds again. The big question is still what is truly going on with Jacob's tummy? GI has wanted to do an upper gastrointestinal endoscopy for a week now. Dr. E. put her foot down. She thinks it is not safe for Jacob to be under anasthesia. When we all gather together for yet another care conference on Tuesday afternoon, we do know that the big questions will be - now what? Will it be safe to do a full endoscopy on Jacob? What are the risks? Can he safely go through that without risking his life? And if he is put under, should we put in a broviac in case he will need TPN long-term? We know the medi-port is not ideal for TPN long-term. And our big question is: how do we get Jacob home?

We are all very tired. It is such an emotional rollercoaster to go from hope to disappointment so many times in the last month. The ugly face of mitochondrial disease has popped up a few too many times. Every decision with Jacob can't just be made as with any other child. There are always multiple considerations that has to be weighed with every decision. The team has been great to involve the right people throughout this hospital stay, so that has been working great. The choices are just very limited when it comes to Jacob. I can see that even clearer as Jacob is growing up. There are simply less things to try.

And sis needs her brother back home. Joakim and I have both commented on how well Sarah seems to have taken this hospital stay despite it being the longest one we have done in three years time. She is older, more mature, which is helping her a lot in understanding what is going on. At the same time, that also makes it easier for her to put two and two together. She knows her brother hasn't been this sick in a very long time. Her first question about Jacob is if he has pooped. Yesterday evening, she simply had it. All sadness, frustration, worries came out in one go. In the middle of being exhausted myself, it is good to be able to share those feelings together.

And for Thanksgiving, both kids got Christmas PJs. Sarah was very adamant that both of them are wearing them tonight despite sleeping in two different places.

 

 

We're at a crossroad tonight with hard decisions ahead of us. I hope we make the right ones. Our biggest motivation is to bring our kiddo back home again.

Good night,

Maria.