HANDLE WITH CARE

One of the things that I am proud of as Jacob's mom is the care we are able to give Jacob. I think that is why his most recent diagnosis of osteoporosis is a little bit harder for us to get our arms around. We give Jacob the best care possible, and yet he is having this big fat red cast on his left arm.

This morning, we found out that Jacob has yet another fracture. This one is on his right arm. This is a fracture that is healing, so it has been there for awhile. They caught it by accident. The radiologist who read Jacob's chest x-ray noted it as they reviewed his pneumonia. There is no swelling. There is no sign of a fracture. And Jacob has not showed any sign of pain. But the broken bone is there.

We now know that Jacob doesn't feel pain like we do. It is a good and a bad thing. It is good that he is comfortable, but bad that he can't tell us when something is broken, and should hurt. My best mother's instinct had no idea that we had a break on both arms.

As many of you know, I am a person of action. I want to find a solution. I want to see results. So, I requested a full body scan of all of Jacob's bones, so we could make sure that we don't have any more fractures. The doctor agreed. This afternoon, we rolled down to the radiology, and Jacob set his records in x-rays. They took x-rays of all his body parts from skull to toes. We have not yet heard back on the results, but I am hoping, hoping for good news.

Every doctor we encounter now is determined that Jacob needs to start on a medicine that will make his bones stronger. I don't remember the name of the medicine tonight, but it is a medicine that is injected into Jacob's bones over 4-5 hours. As Dr. E. explained it to me: it takes the calcium from his body, and puts it into his bones. Throughout the injection, they take labs to make sure Jacob is stable and he is getting calcium throughout the procedure, so he doesn't get a calcium deficiency. We are actually hoping that we could schedule his first injection this week as we're already in the hospital. We're waiting to hear back from endocrinology to see what they say.

Other thoughts that are going through my head are - how quickly can we purchase a handicap van, so we don't need to lift Jacob in and out of the car, how quickly can we get the hoyer lift that we just started the process for, can Joakim work from home some to help us with lifts, can Gemma and I overlap in our shifts so we can help each other with larger lifts? What other things can we do to keep Jacob safe? It is a balancing act. Fractures will happen as we reposition and move Jacob, and at the same time, Jacob needs to be moved, since he can't move on his own.

Apart from the new fracture, Jacob's pneumonia is going in the right direction. Jacob was without his bi-pap for 8 hours today! He is more alert, and have started to vocalize and give us smiles again. He was so happy to see his nurse Gemma today! He just couldn't stop moving his lips. He had so much to tell her. And he got to enjoy the ICU spa today. Jacob hasn't had a bath for 5 days, so started to be a bit stinky. See how happy he is:

We are being moved up to the floor either overnight or tomorrow. We are hearing that the ICU is full again, and we are the first ones to be moved up, if a sick kiddo needs a bed tonight. We're just very off with our timing with the ICU this time...I don't know if I can complain though. If Jacob is the healthiest kid in the ICU, I gladly leave this place, even if it means packing up our stuff in the middle of the night.

We're starting to also talk IV antibiotics for going home. He is once again on Levoflaxin, which works great on Jacob. It is just a very tricky one to do from home, since it doesn't come in a grenade and you have to manually prime the antibiotics, use a drip rate for infusion, and it is just a very manual procedure for something that shouldn't be. We're willing to take on the challenge, if it means us coming home.

Tomorrow, we're hoping to be up on the floor, which means a step closer to coming home. We will also know more about Jacob's bones and next steps for his osteoporosis. But for right now, Jacob is sleeping comfortably, and I am hoping for a quiet night, and that we can wait to be moved up til the morning :-

Thanks again to our amazing support system of friends and family! You all amaze us.

Much love,
Maria.