Some good news! Theo will be coming home Monday afternoon.
We are going to try to find time to clean up the house this weekend. I will clean out his pack-n- play this weekend sometime and finish getting his room together. He has been sleeping in his bassinet by our bed, but I think he has grown so much in the month we have been here that I don't even know if he will fit in it anymore! Plus, we will have his equipment for feeding and medications and he will need to be propped up some as he sleeps, so I think that he will need to start using his crib when we get home. I have been keeping lots of his clothes and and some other things in the bassinet part of the pack-n-play and using the contoured changing space for naps and such, but I think he is going to need all that space in the bassinet so I'll need to get all that straight. I also need to find a wedge pillow so he can sit up some as he rests. The home health people (from Bon Secours) will come to the house to teach us how to operate the feeding pump and medication stuff and will come by periodically--I think once a week--to check the equipment.
We will need to give him all his medications and feedings through his ng (nasal-gastro) tube. He won't have to get the g-tube in his stomach since he is not on chemo anymore. The main concern with that was that ng tubes, which run through the nose, down the throat and into the belly, can cause irritation of the nasal passages. With the suppressed immune system caused by the chemotherapy, a small irritation like that could easily lead to a sinus infection. But now that is not a concern. His ng tube will just need to be changed monthly. It's very easy to check for correct placement of the tube and use it for feedings and medicines.
He is on morphine every four hours and ativan prn (as needed) for agitation and irritability as well as any pain he might be experiencing. The doctors don't really agree on whether he should be or can be feeling pain, but to us (and many of the nurses) he appears to be in pain some of the time. Sometimes he just seems really irritated or mad, but neither of us (nor the nurses) can stand to see him upset like that, so we choose to give him the medications. We will give him all his medicine and feedings at home, and luckily, he will be getting most everything though the ng tube, some things through the Hickman. Once his antibiotics are done, he won't be on a constant drip iv so we can unhook all the tubes, hold him easily, take him for walks and rides, etc. It will feel so much more normal. As long as he is as comfortable and as happy as he can be, that is all that matters to me. We are really glad he is going to be coming home. I think he will feel much more relaxed and comfortable in his home environment. We will also be getting support from an organization called Noah's Ark Children's Health and Hospice Care for kids with chronic and terminal illnesses. Their nurses will come in at least once a week to help us with the medical aspecets and they will be providing services for psycho-social needs with social workers, support groups, volunteers, etc. We've been here almost a month. Monday, when we are scheduled to leave will be the 30th day. It's kind of appropriate that the Health and Hospice care is called Noah's Ark considering we've been through quite a storm for 30 days and 30 nights. I believe miracles can happen, but I also have to proceed in the way that we are. I can't put him through the trauma of chemo with things the way they are now. I feel incredible sadness, but also a sense of peace. We want Theo to be happy, peaceful, loved, at ease and comfortable. We want all the time we have with him to be joyful. We can't avoid feeling sadness, but we also feel so grateful to have been given the wonderful gift of Theo. So much of my strength and ability to handle this has come from my love for Theo and his for me. Much of it has also come from all of you, your prayers, positive energy, love and support gives us all strength. Thank you all so much for everything you have done and continue to do. We will continue to need your support after we get him home.
I also wanted to let you all know that so far, it doesn't appear that the infection is in the shunt but rather in the central line (the Hickman). The CSF fulid they drew has not grown a culture in 24 hours. They will check it again in another 24 hours, but they are thinking that it is probably not in the shunt. Antibiotics are continuing for 10 more days which will clear up the infection in the line.
I will continue, of course, to keep you updated and try to post more pictures of Theo for everyone to look at. Everyone who was thinking about visiting the hospital, we would love for you to wait till we get him home and visit us there. We are really tired of the hospital and will be very glad to be able to have people see us and Theo in our own home.
Love and kisses,