The in home care will consist of visits to evaluate Jude's situation and they will discuss what level of care they will need to provide him. In patient care is available at a very nice facility in Fort Worth that has private rooms. They provide a nurse, an aid, and a volunteer for each patient and they have 24/7 eyes on the patient. We would utilize this if Jude has a pain management problem or other issue that needed to be tended to that would normally require hospitalization. They CANNOT do Xrays there so we are afraid that with Jude's severe chronic lung disease we will continue to go to the hospital but it is nice they have the facility available. They allow us to stay with him 24/7 and we can even bring our dogs. How amazing is that? They also have respite care at a similar facility where a patient can stay up to 5 days if the parents have an emergency situation or just need a vacation..........I highly doubt we will ever use this but I can see why people do. Our nurse told us that she even had a teen that was on hospice once ask to come stay at the respite center just for a break from her family. Hey we all need breaks from our moms and dads when we are teens and I respect that she had a warm safe place to go with 24/7 eyes on her medical condition. Final is crisis where they assign a nurse with Jude's nurse to be in the home from 8-24 hours a day to help with pain intervention and other situations. Crisis intervention also helps with final moments but we will pray that isn't something we have to face any time soon. During the nurses evaluations Jude really just had a hard time.........which is his new normal. He was upset, toned out, oxygen would drop, and he was just in pain. He would moan, cry, and was just having a very difficult time getting comfortable. She said that she would really consider this more of a crisis situation and that Jude needs some pain medication intervention. While she was there we would spend a lot of time repositioning Jude, working with his O2, and do our best to make him comfortable. We would go from left, to right, to back, suction, left to right to back, suction. I would stroke his hair and tell him everything was okay. She said that in a situation like that she would probably give Morphine to help him relax. We explained this has been Jude's new normal since July. We also explained how any time we give new medications we feel that we have to give something else up like interaction from our son. She acknowledged our fears and told us she would keep that in mind. However we understand that Jude needs some help
She mentioned how shocked she was at the amount of nursing hours Jude has and expected him to have more. I then told her we had to fight for what he has with an attorney and she shook her head in disgust. So she started a list...........her office will get all his over the counter medications now, she wanted an oxygen concentrator that went to 10 liters vs 5, and she wanted pain management medications in the house. She wants more nursing hours and she will visit at least twice a week. By 7pm Jude had the new oxygen concentrator delivered to our door! Nurse Allen and I just stood with our mouths open in amazement!!! We feel like Jude and our family have been struggling so much with his condition since the July surgery and in one day this lady has found ways to help us!
The pain medications should be here via a courier before the end of the night. The Hospice doctor also wants to come out to meet Jude and get to know his medical conditions. Not to mention Palliative care wrote an entire 5 page summary of our family, Jude's needs, and how Jude's health has decreased. This was done so Hospice could get to know our family and the current situation. I was amazed at the level of interest put in our family today and how they really seem to care about Jude and making him feel better.
Jude is sick and this isn't easy. Our situation was hard before but it wasn't anything I couldn't handle. I may have been tired at work but I could keep going. However as an example.......last night I went to bed at 4:20am when I finally got Jude's oxygen levels stabilized again. I cannot do that and work.............it's impossible. Noted in Hospice charts from palliative care it stated "parents need to work if at all possible". So they knew! I hate my little boy is so sick. I guess I will never understand why some babies have to suffer so, but it's a reality of life. Jude's had a hard day and I hope he can have a better night and get some rest.
The nurse with hospice said she is always hopeful and children are discharged a lot from hospice, but that she is also realistic and honest. I think we will get along very well.
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This is more to do with your previous post but I wanted to say my experience with hospice (but your post summarizes my thoughts very well).
I have experience with hospice on both the personal and professional levels. Personally, I have done hospice 'only' with 2 adult family members. Adult hospice is VERY different than child hospice in many ways. (The core belief of QUALITY of life underlies both. And to me that is the deciding factor. When the focus become more tilted towards quality of life for a child, that is a good time to make the jump). Professionally, I've done hospice for both kids and adults. I've seen both kids and adults 'graduate' from hospice.
One of the things that would make me more seriously considered 'hospice' for a child is the support that the WHOLE family gets with hospice services. Particularly the siblings. Not only will they provide support services for the siblings, those support services are much much more used to supporting kids that are in similar situations. Kids (even teen age kids) do NOT process, deal with, or mourn how adults do. Even if Jude isn't 'terminal', being his sister gives Emily things to think about that siblings of non-medically fragile kids simply do not have to deal with, or even are remotely aware of happening to kids. The state I was working in allowed for therapy services when on hospice (for adults as well as children), this is my profession. For adults, we had to be VERY we weren't trying to do anything 'restorative', only skills that the person valued, significantly improved QUALITY of life, or helped the family with care. With kids it was different, we were allowed to work on 'developmentally appropriate acquisition of new skills'. Essentially, I could work on whatever skill the family/child wanted me to, as long as the FAMILY/CHILD saw IMPORTANCE in that skill.
The other thing was at least with the company I did hospice through, was an underlying difference of philosophy in the workers. This company had a 'regular' home care arm as well. It was excellent, but the culture was slightly different. Those of us that worked the hospice arm really viewed it as an honor to be welcomed by the family to walk WITH them on their path. We viewed ourselves much less as advisers for what we personally thought the best choices/path, but as people to let the family know the options that were out there and support them with THEIR decisions.
Good luck. I hope you have a very good experience with hospice and have an awesome team to work with (sounds like it is going good so far)
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