It is Friday night. A week ago, we arrived in the ER. If someone would have told me how my week would look like, I would have asked if we could simply skip this week. Maybe just this year. I have had weeks like this before. My eyes are so tired from not sleeping. My shoulders and neck are so stiff that I just can't wait for a massage when we are all home again. Feelings are strong and many. Meals are at odd hours. I am scrambling to just do the minimum around the house when I am sleeping at home. I had forgotten how exhausting it is to live life in and outside hospital at the same time. The worlds don't jive well together.
Jacob's osteoporosis went from confirmed to "osteoporosis with fractures". After the full body scan, they found that Jacob has a T4 wedge compression fracture in addition to his two humerus fractures. This is happening from Jacob simply sitting, his bones being to weak to support his spine. They can't really do anything for that, more than watching it, and hoping it won't get worse. Endocrinology came to the ICU after the full body scan. They wanted to start the bone injection on Jacob right away in order to not loose any more time. The medicine is called Pamodronate. You give it IV. The simple way of describing what the medication does is that it takes the body's calcium and puts it in your bones. We did his first treatment today. Everybody agreed that we should do the treatment when he is in the hospital anyway. They started by drawing labs in the middle of the night. At 5 am the nurse started one of his seizure medication IV, so he would have better seizure protection today. From the labs, it was clear that his calcium level was low, so he got a double of dose of calcium before the treatment started. The actual infusion takes 3 hours. After the infusion was done, labs were drawn again. It was clear that Jacob's calcium was low again, so they are now talking about making his daily dose higher. The biggest risk with this infusion is a high fever and flu like symptoms. They can come on any time tonight thru Sunday night most likely. He is also on Prednisone and Ibuprofen in case he gets sick. I feel that the medical team has taken any precautions they can this time. There is noone that wants to wait and see if Jacob will get sick.
We also found out that Jacob has 3 (!) bacterial infections. He has pneumonia, pseudomonas, and serrata. He is on a 14 days IV antibiotics course for that. They also suspect that he has a respiratory virus to top it off! His secretions are thick and nasty, but he has definitely turned a corner when it comes to his respiratory status. Today was the first day without bi-pap! He is still using it at night.
We also got some nasty news from Jacob's nursing agency. They simply called me up in the hospital yesterday and ditched Jacob. Very convenient since he is in the hospital. Someone else could take over his care, since they no longer felt that they could "safely" care for Jacob without 24 hours nursing in our home every day. I was told that I could no longer be Jacob's CNA (nursing assistant), and they would not take Jacob back before they would have 24 hours nursing care available in our house. Not once did they open this for discussion or asked what I wanted as the Client. I was simply told that this was their requirement, and they wouldn't even know if they could fill that requirement, so they would support me in finding a new nursing agency and release Jacob's nurses. I was furious and devastated, and I couldn't even finish the phone conversation. I told them that we had to talk at another time, since they just terminated my job and basically had made Children's Hospital Jacob's new home. The worst part is that this is all BS. Jacob is not qualifying for 24 hours nursing care, no doctor would prescribe that to him. Secondly, we as parents are the ones who have the final say in how much nursing we want, and we do not want 24 hours nursing. So, it looks like we're turning down our nursing agency's offer when in reality they are ditching him. They are more worried about their liability when it comes to a broken bone than the care of Jacob. Dr. C. laughed out loud when she heard what they had pulled on us. She reminded me that they had had no concern caring for Jacob when he was in status epilepticus every night...
The sad part is that we are not having nurses for me going to the mall or hanging out with friends. We are having nurses, so we can bring Sarah to school, so we can go grocery shopping, so we can work, so Jacob can go to school, so we can make sure that Jacob is safe when we are sleeping at night. They are our life line, and essential to Jacob's well-being, and for us to function as a family. Changing Jacob's diaper with a casted arm and fractures is currently a 3 person job in the hospital...we are not doing this for the fun of it. It is for us to be able to run the Hallberg household. And just the thought to loose Gemma and Libby from our lives is unbearable. We love them dearly, all of us.
Gemma and Libby immediately made it clear that they are following Jacob to a new agency. Yeah!So, we are starting the process to find a new agency who is willing to take on Jacob's care. It is unfortunately not the quickest process, since the funding is coming from Medicaid. Anything that entails Medicaid funding does take time...It is unclear at this point, if the hospital will discharge Jacob before he has nursing care in place or not. This could mean another 2 weeks in the hospital...we will use all of our connections at the hospital to see if there is a way around this, so we can go home without nursing. Joakim and I feel that even if it means a lot more work, it is still easier to do it if we're all under the same roof.
In the middle of broken bones, pneumonia, and no nurses, I do believe that things happen for a reason. We had not been happy with our nursing agency since our old case manager left us some months ago. And we only lost the agency, not our fab nurses Gemma and Libby.
Jacob is still not showing any signs of being sick. We are hoping it will continue like that over the weekend. Sarah is visiting with Jacob tomorrow, so we're looking forward to that. Otherwise no big plans for the weekend.
Thanks everyone for being with us on this journey. I can't thank you all enough for always checking in, leaving us messages, baking and making dinners, giving us treats and magazines, offering to take Sarah, and the list goes on and on. You are a big, big part of why we again came through another really rough week.