We’re home again. Jacob looked too good to have a line infection, so they send us home a bit before the cutoff of the 72 hours blood culture, which was still negative as we left. We still have not heard back from the hospital, so I think the line infection can be ruled out. That’s great, since they would have taken out the medical port in that case.
Jacob is recovering really nicely considering him having pneumonia. He is back on his regular feeding schedule, talks up a storm, doesn’t seem to have lost a lot of strength, and no suctioning!!! He also doesn’t cough a lot. In fact, he hardly coughed at all with this round of pneumonia. I think that’s a bit weird, but there was no doubt that he had pneumonia according to the x-ray.
Jacob has a hard time going to bed tonight. He is now used to go to bed late due to the nurses running in and out of his room in the evening, and seems to have no intention to go to sleep. The second I leave the room, he gets upset, so I am sitting on the floor with the laptop writing in the dark.
Joakim and Sarah are up in Breckenridge. They have had a good day of swimming, biking, and relaxing. Tomorrow there will be more biking and swimming. It’s weird, but I’m not that disappointed about yet a vacation not happening for us. In fact, this is the third time we had planned to go to Breckenridge this year, and we couldn’t go all of us. I think I am slowly learning to see what truly matters. Jacob is home, we went for a walk tonight and it was one of those perfect summer evenings. Maybe that’s simply enough. I think also deep inside I’m so thankful that this pneumonia didn’t hit him as hard as the last time, and we don’t have weeks and weeks of recovery ahead of us. We seem to pretty much be able to go on with life. I am still hoping to get up to Breckenridge some time this weekend, and spend time with my little girl. She is all thrilled tonight after having found out that some of her favorite friends will be in her 2nd grade class. That’s all she needed tonight.
On August 27th, Jacob goes into surgery. He will then have botox of his salivary gland. This will reduce Jacob’s saliva, and hopefully reduce his risk of aspirating. We’re excited to have this done. He will also have a liver and muscle biopsy done that day. This is to further determine a mitochondrial disorder diagnosis. At this point, we’re almost more doing it for Sarah than Jacob. It would be great to find out what Jacob has, but it might be more of a factor the day Sarah decides to have kids than for Jacob’s care itself. I can’t imagine that his care today would change significantly.
We also got results back from the sleep study. Jacob has moved from severe to minor sleep apnea! That is some really good news in the middle of everything. This was Jacob’s biggest struggle (with seizures) 2 years ago, and now it has moved to the backburner. Jacob has irregular breathing pattern though, but this is coming from his brain rather than from his airways being too weak. We’re not getting rid of the oxygen, but at least it doesn’t make the case stronger for a tracheotomy at this point.
We’re also excited that Jacob is getting a hospital bed this week. He is almost growing out of his crib, and he will now have a regular size bed that we can adjust for feedings at night. We have also ordered a new wheel chair and car seat, but no word when we get them yet.
Lastly, my seizure group meeting was really good yesterday. It is so nice to realize that doctors and others within the epilepsy field really want to listen to the opinions of us parents. I also have connected really well with the other mom Melissa. Our kids are so different, but it gives a good broad parent perspective. Melissa will go to St. Louis in September, so my trip won’t happen until January. That feels good considering everything going on with Jacob at the moment. The seizure action plan is in place, and apparently the school nurses out in the field love it. We’re getting Jacob’s plan in place this coming week as well, so that will be great for Bal Swan and anyone else in Jacob’s care. I am also so excited that we were asked to start a parent support group for the Special Care Clinic. It will start with focus on kids with seizures, but most kids seen at the SCC have multiple diagnoses, and we will try to make the focus both on education and support. I love that clinic from the nursing assistant greeting you at the door, to the nurses, nurse practitioners, and of course Jacob’s doctor Ellen Elias. Words are not enough to describe her. She is always right on when it comes to Jacob’s health and care. She takes absolutely no risks with him (which also means cancelled vacations!). At the same time, she has the biggest heart. She has done so many things for our whole family that I don’t even know where to start. She is always very personal with us. She has a wedding in Estes Park tomorrow, but if we do need her, her pager will work up there. I can only say, serious commitment and I do think a big heart for our Jacob.
Jacob is finally sleeping, so time to get a more comfortable place for tonight than the bedroom floor!
Good night, Maria.