Monday, September 1, 2014
As I drove to Seattle Children's Hospital today I noticed the yellow leaves on the trees. It dawned on me that today is September 1st. With the changing of seasons many changes are occurring for my family. Abe has one more day of intense inpatient PT, OT and recreational therapy then he will be released back solely into Glenn and my care. We will be responsible to break the non desirable movements such as bunny hop crawling, reverse "W" sitting, standing on the tips of the toes, crossing legs, ect. Wow this will be a lot of work especially with an active 1 year old Luke running around. Not only has a new month started since we first got here and the leaves are starting to change Luke has matured a lot. Luke can walk/run faster, say more words, sign "hi" "bye", "more", "all done", sit and play with play dough for 5 minutes (this is major for a 1 year old boy to sit for that long) and open doors. Abe has regained strength but lost 2 lbs since first getting here. Abe gets frustrated with the restrictions on "no don't crawl that way", "no you can't stand yet", "no you can't crawl out of the hospital bed". The PT wants his movements to be strictly monitored which is impossible in a hospital setting when Luke is running wild. It 's a great sign he is trying to move around more. Once at home I will need to be momma hawk watching his every move while keeping Luke out of trouble. I should lose a lot of weight will all the running I will be doing. Other changes that my family is facing, last month of active duty military however Glenn has been at Boeing since mid July. Yes it was not the ideal time for him to start a new job. There was a delay in Abe's surgery getting set up because the nurse coordinating it was on maternity leave. We have a van, house, lots of upcoming co pays for all of Abe's medical care coming up so yes my husband did need to work during this hospital stay. Other father's do the same thing. Some fathers lose their jobs and foreclose on their homes when their child is in the hospital. Since this is inpatient stay 8 for us for Abe in 5 years we have met and talked to a lot of people. Some fathers have to stay back in the states where they live to care for other kids and to work to provide for their family. It's not that the father's don't want to be there they just want to care for their family and sometimes it might not always be right there for every second, every minute of every day during an inpatient stay. Glenn is the oldest of 4 children so he wants to be responsible and think long term about providing for his Abe, Luke and me. Abe's care is going to add up as we transition to a "retired military" family. Yes $12.00 copay is not much but when your child sees PT 5 x a week, OT once a week and ST once a week plus ABA it adds up. Not to mention fuel and Tacoma Narrows bridge fee, diapers, wipes and other things that insurance does not cover that improve Abe's quality of life. Also specialists care like neurosurgery, pulmonary, neurodevelopment, endocrinology, rehabilitation doctor, ophthalmology and dentist more than the average 5 year old. Even if he sees 6 providers in one day the copay is $12.00 for each provider he sees. Raising kids is expensive but thrown in special needs and the cost to raise them dramatically increases. This past week was difficult, I had to drive Abe to Bothell for casting for new AFOS (ankle foot orthodontics) since the new ones I picked up July 29th did not fit properly and they were still under warranty and made by an outside company so they could not come to Children's to make them. I had to shorten respite care hours that day and use only for the appointment in Bothell (thankfully she was willing to come even though not the full 4 hours we had originally planned) because Abe had to be back by 1pm for PT. Abe was put in viral isolation Tuesday night due to cough and sneeze so technically Luke was not supposed to be here. I was advised to make other arrangements for Luke. That is difficult because he breast feeds, I have no pumped milk stored for him and no family in the area. The main charge nurse on day shift said well he is breastfeeding and your own kid so just stay in the room. So Wednesday Luke, Abe and I had to stay in his room after we got back from Bothell. Luke was not allowed in the play room or the outdoor park. I completely understand because there are many immunosuppressed kids around here. I had signed up for a dinner that the Fisher House was taking guests to. The plan was for Glenn to watch both boys at the hospital. I called Glenn and let him know the situation. Since they did not recommend Luke to be visiting I had to make an extremely difficult decision to leave the hospital so all of us, except Abe, went out to dinner. I stopped in the hallway and cried when I asked the evening charge nurse if his door had to be closed. It broke my heart to know that Abe would be in a room alone until Glenn got there. I got stressed out that he would try to climb out of bed and would fall. Not sure he is mature enough to use a call button yet. The resource nurse assured me that he would check on him, help him with dinner and play with him. Since I signed up for the dinner I did not want to be irresponsible and not show up. I left since the nurse reassured me. It's rough but as a mom of a special needs kid you must take time for yourself. On other days he was able to sit with the nurses and he is so happy in the morning when I get here. Since he was in viral isolation he had to stay in his room and all of this happened after I left Tuesday night. We enjoyed the dinner, took me over an hour to finally get there due to traffic and GPS constantly wanting me to take I-5. Abe did great with the nurses and fell asleep. Kersey Mobility called me Wednesday afternoon asking if we wanted to come by 9am the next day (Thursday). I said yes because it needs to be done. I had been working on figuring out insurance coverage or reimbursement for this since May, well we visited all the places that do the install in February and March but got serious in May. It was a choice between Abe going for kindergarten testing the very first day after leaving the hospital,completely missing school Thursday or missing Friday PT next week for kindergarten testing. I don't exactly know the kindergarten schedule for next week but I know the testing options were Wednesday, Thursday or Friday. If the lift was installed next Thursday I potentially could have had both kids with me or if we dropped the night before no transportation all of Thursday therefore Abe misses school since no bus service till the 8th. Yes it was a huge inconvenience to entertain a 1 year old all day there but it's done and Seattle Children's will be happier that the chair is more secure in our vehicle. Ideally we wanted it installed in June but it took Tricare awhile to get it worked out, for Universal Mobility to find a local place to subcontract with them. Originally it was with Absolute Mobility but they wanted exact measurements to ensure it fit properly. I could have dropped by their Tacoma location July 18 but was told no not necessary just get it measured. I had Olympic Pharmacy measure it while the chair was being serviced. I left voice message with height and width with Universal Mobility but they are 3 hours ahead so she received the voice mail on Monday. Absolute Mobility called me Monday say we need you to bring it here with the van for exact measurements. We came Friday July 25th after Abe's PT and ST appointments. I called since both boys sleeping and they needed to look at chair and van. Unfortunately the guy that came out had no idea about it. I asked for the lady I spoke with but she was busy, Abe had ABA later that day so I said I can't wait too long. I asked do you need to measure it,even asked several times, response back "No" I have the information I need. Again Monday morning a call, we need you to come back in and get it measured. The day I could come was August 1 after PT and ST. This is now 3 week delay, well even longer because Tricare called me shortly after 4th of July to say it was approved. Universal Mobility switched to Kersey Mobility per my request. I tried to schedule the two days I had 10 hour respite care but they did not have the part the first date I gave them and the 20th they had no availability. The lift needed to be installed, lifting and pulling out a metal ramp was heavy and deemed unsafe transport by the car seat specialist at Seattle Children's. I had to make the decision late Wednesday afternoon to get it taken care of the next day. It was less than ideal to leave Abe in the hospital all day alone but traveling with a 340lbs power wheelchair improperly secured was not ideal either. If Abe were still in viral isolation Luke would not have been able to visit any ways. I knew Abe had a lot of therapy on his schedule and would be super busy so I made a tough decision to have the lift installed. Luke and I got them early, we took a few short walks then a 2 hour walk. It was difficult but would have been more difficult with both kids there all day. Sometimes you just have to suck it up and do what you have to do to make life better for your special needs kid. Enough about the lift, just hope it continues to work and no issues. The 2 week check up should not take all day like the initial install did. The good news about the lift is I got exercise that day 2 1/2 hour walk, met a young adult that I recognized as a volunteer from the hospital, and retired teacher and a 35 year old with CP that has the SDR when he was 14 years old. The 35 year old is not able to walk any longer but he blames himself saying that he had a lot of pain so he chose to be in the wheelchair and now he can't walk. That part was not reassuring but what gave me hope for Abe's future is his man lives independent from his parents, had a job and drives himself. He thought I was 22-29 years old, boy was he wrong. I was impressed that despite his CP since birth, he was a preemie of a twin gestation but his twin brother did not survive, that he was so independent.Also the volunteer is a brain cancer and hydrocephalus survivor, former patient here. Although he can't work a typical job he is motivated to help Seattle Children's Hospital even if it means taking 3 buses to get here once a week. Glenn met us at the mobility place since close by his work and I heard Abe was out of viral isolation so he is able to leave his room. After the install was complete Luke and I headed to IKEA for a break. It was not a quick trip but IKEA never is. I saw it going to Kersey Mobility in morning and decided it would be a fun place to check out since they get new products all the time. Another transition is Abe is going to kindergarten and will be transported in his power wheel on the bus. Also his PT, OT and ST have been transitioned to CTU in Puyullup. He will have PT 5 days a week and OT once a week. In the past PT was once a week and OT twice a month. We lose respite care October 1st. Please be patient with my family and understand that transitions are difficult even happy transitions. We might be tired, stressed, won't remember your name, might have to end an adult conversation to chase after Luke or correct Abe's crawling. Please understand we are not trying to be rude it's just season of our life that will pass. We are not even sure if we will do MOPS and AWANA this year. We do plan to return to church but not sure how the transition of Abe's movement restrictions will play out. Sorry for the extremely long post. I had both boys sleeping right now and WIFI so I got carried away. Luke is awake now and we have a lot to get done before we are "all done" hospital tomorrow.
Posted by Karen Goddard