Tight Muscles

Abe is over 20 days post selective dorsal rhizotomy. Initially we noticed wow his muscles are nice and loose it is easier to care for him but now he wants to bring his legs up and his legs are super tight. He was weaned off the Baclofen a week ago. It was over the weekend we noticed the tightness. The rehab doctor that did the pre operative evaluation did not expect him to have a lot of dystonia, http://www.ninds.nih.gov/disorders/dystonias/detail_dystonias.htm. The surgery does not correct the dysonia therefore a night time dose of Bacolfen will be restarted tonight. Abe doing pretty amazing, rode a trike down to the play room and outside,getting his strength back quickly. Since yesterday evening he has been very tired, not wanting to eat very much, occasional cough and sneeze. He has been sleeping since about 245pm today, well occasionally waking up crying a little bit. I really hope he is not getting sick especially since school starts next week and he has so much physical therapy to do. The professionals working with him are impressed with his skills. He is tired and sensitive to light right now so I might have neurosurgery come and take a look at him. He had an MRI the day of surgery and his VP shunt was reset that day so I would think if there were any problems it would have already showed up. If he does need neurosurgery to check him at least we are already here. He gets to leave the hospital for a bit tomorrow but not for anything fun. His AFOs we picked up July 29th are too tight around his calves and are too long in the foot. Since an outside provider did them I will have to drive him there. I just hope he is feeling better. He is sensitive to light and noise right now. I know they let him play with Ipads and they had some magnetic trains in the therapy room. I rarely get to attend this therapy sessions because I am super busy with Luke. I only have time right now to update this because respite has Luke and Abe is resting. I spend most of my time here keeping Luke occupied. Just one more week. We have done this before, we can do it. His NICU stay 5 1/2 years ago was 11 days at Madigan and 96 days at Seattle Children's we can handle one more week. I am taking a break tomorrow night while Glenn watches the boys. Today is the last day of respite care at the hospital. I am very thankful that our hours were increased. October 1st we completely lose respite care since officially retiring. Although some would say, "you only have 2 kids". Yes only 2 kids but Abe requires a lot more care than an average 5 year old just at home not including the multiple appointments for ST, OT, PT, specialist care, dentist every 3 months,ect. I have used respite care for the last 4 years for my own doctor's appointments, dental, eye to go to MOPS evening events, ect. Not only do we lose our extended ECHO benefits with Tricare but we lose respite care.  It will be an adjustment for all of us. Glenn has been at Boeing for a month now but works a distance away from our house. So Abe is showing signs of respiratory infection. If Abe does come back postive for a respiratory virus then Luke can't visit which means I won't be able to either unless someone can watch Luke. It will break my heart if I can't see Abe and advocate for him. I especially want to be here because everyday he has different nurses everyday and sometimes a nurse from 7am to 3pm, then 3pm to 7pm then 7pm to 11pm then a different one 11pm to 7am. We occasionally get the same nurse every day but it's rare. From my nursing experience you get to know the ends and outs of your patient if you are assigned to them when you work. I am surprized that 8 hour shifts are still around combined with 12 hour nurses. When I mentioned today that he has an appointment in Bothell the nurse was shocked that I would be taking him out of the hospital. I thought for sure it was in his chart somewhere. The charge  nurse knew but not the nurses assigned to him. I know when I worked here it was stressful to have patients for 4 hours then I was floated to another unit with different patients. 

Torn Heart

Yesterday I had a doctor's appointment for the pain I had been enduring on and off the past several days that is also accompanied by nausea and vomiting.  It most likely was a kidney stone because the pain comes and goes, causes other urinary symptoms including bleeding then completely goes away. Think about this a large piece of a hard sharp, most likely not smooth, calcium carbonate deposit  scraping the side of a tiny tube, ureters as it moves in the urinary system, yeah that is kidney stone pain. Worse than labor in my opinion because my labor was not very painful (non medicated birth for Luke) except the vacuum extraction part but it was short lived.   My urine analysis showed no evidence of a UTI or kidney infection. I had pain for several hours so did not see Abe. My heart felt torn because it was a nice break away from the hospital but I missed Abe. Luke and I took a nap once my pain subsided, it was quite, dark, comfortable and peaceful compared to hospital life. After I felt better and had an appetite back Luke and I enjoyed Taco Time for dinner and a trip to Costco to get ready to eat foods. We also did some laundry then loaded back up to head to Seattle. Since respite was scheduled today Luke and I enjoyed another day to take a break and I was pain free. I took time to make a real breakfast, well scrambled eggs and toast. Then we went to Green Lake park and Starbucks. Luke ran around for awhile then we kept on walking. We walked the whole length of the park and an event was going on. I was super excited to get Luke a beach ball that will entertain him for hours while in the hospital so he can burn off some energy. We also entered a Spring free trampoline drawing. It would be super cool to win this. Although Abe can't walk without assistance he enjoys bouncing on non crowded trampolines. Luke would enjoy it too. Only 2 families win per year so doubtful but you never know. Home Depot gave us from wood kits, Gymboree some balls and bubbles and Seattle Children's a first aid kit. We did not hit every booth because they were closing down but we went to a few that is exactly what we needed right now, some bubbles, a few play balls and a reusable grocery sack (by the way Seattle charges .05 to .10 per bag). It was a nice break from the hospital and honestly I enjoyed being away from the hospital.  Walking around Green  Lake brought back memories because when I moved to Seattle 10 years ago I would roller blade, walk and ride my bike there when I had time. It was a great place to do this. I wish Kitsap county had a similar park that is good for bike rides. My heart is torn because my 5 year old was in the hospital and I enjoyed being able to nap Friday and being at the park today. I also know that to be the best mom and caregiver of a special needs kid you must care for yourself. I want to sign up for a 15 minute massage here but I don't typically have respite care on the days and times it typically would be available. Yesterday respite came for only 4 hours but today she came all day so it made it a little more bearable for me to be away. I was in too much pain to be driving back and the Flomax the doctor gave me can cause drowsiness so I wanted wait several hours to drive back. Flomax is used for prostate problems however it also relaxes the urinary system so kidney stones can pass easier. I have only required one dose so far and none of the stronger medication or antibiotics. Abe is doing pretty good but is exhausted. Today he had only a few hours of therapy but is very moody and very tired. He is being weaned off the Baclofen. Tomorrow is his last dose. We are hoping he won't need it any longer because it can cause constipation, drooling, foggy brain and many other side effects. He has been pedaling a trike and the therapists are all impressed with his skill with this even with the casts on his feet. He has casts on his feet to lengthen his tendons. He seems to be tolerating this without difficultly. He loves the attention from the nurses, volunteers and therapists. We are getting both kids car seat checks next weekend since kids grow and car seats might not always be appropriate. I have been told in Arizona and Washington 80% of people improperly install and use car seats. We get these checks so often at Naval Hospital Bremerton that was we have been teased about becoming car seat specialists ourselves. Abe is probably close to out growing his car seat so he might need a special needs one. I figured the best place for a car seat check for a special needs kid with mobility impairment, CP, is Seattle Children's. Abe is finally 35 lbs.  We are also having Luke's car seat checked since his last check with in April and he has grown. I would recommend other parents get car seat checks as well. It is a free service and better safe than sorry. I am thankful Glenn gave me a break yesterday evening and today he took a break today while Luke and I went to the park. I am also thankful that Abe seems to being doing well, for additional respite hours and for friends. I will update more most likely Monday or Wednesday.

Riding a trike

Today was another busy day. Slowly adapting to life in the hospital setting. This is Abe's 8th admission since he was born but our first one with another child in tow. Luke is enjoying the playroom. Since we did not have respite today they gave us a volunteer to play with Luke in the playroom so I could attend Abe's PT,OT sessions.  Abe had tons of PT, OT, recreational therapy. He enjoyed drawing buses in the playroom and taking the stander down to the playroom. Both kids are currently asleep. I am waiting for Luke to wake up so him and I can leave so I can eat dinner. It's getting so late I might just wake up him now and hope he goes back to sleep before 1am. Yesterday was rough I had nausea, vomiting and severe pain my back which I attribute to a kidney stone. I almost went to ER or urgent care but the pain subsided. The pediatricians were so nice and supportive during the kidney stone pain I endured but most pediatricians are very caring doctors to begin with. I have a doctor's appointment this week but I really don't want to travel the distance and leave Abe in a hospital alone just to be told yes you have a kidney stone, CT will call to schedule you,drink plenty of water, ect. I am feeling better today but I was in pain in the morning. I sure hope I can pass the stone without medical intervention but I know I need to be strong to care for both boys. Abe got to pedal a trike around the unit and he looked so happy. The PT was impressed by his skill. He was taught early by PT, OT and private OT at school to pedal a trike. His feet were casted again to help stretch his tendons in the back of his ankles to keep his feet in a neural position, he has a tendency to toe point due to the CP. I have enjoyed all the Starbucks the hospital has.  Abe is getting stronger every day and shows a desire to move. Tuesday a young visitor, 6 year old boy and his mom came to visit. The boys were cracking up and Abe told him that I "sugared him up" which I did with the root beer float I ordered for him. The children's pastor of Christ the Rock, Pastor Dave, came to visit today and brought some chocolate, lemon to add to water to help my kidney stone. He prayed for Abe and our family. A mom I met at a baby wearing group gave him a tula baby carrier I could borrow since Luke is getting too big for the Ergo. I carried Abe in the Ergo for a long time, till age 3 but he was much skinnier than Luke. We appreciate all the support we have, for friends and respite care. Not sure what I will do when we lose respite care in October. I will update as I can. My typing is keeping Abe awake.

Taking a break

Respite is here today so Glenn and I are going to take a break. I do wonder how someone else can care for both boys in this situation. I don't want Luke running around in the hospital room because too much bio-hazards to get into. I know my boy and he will go straight for the bin labeled bio-hazard or the trash and power cords.  Luke is extremely active boy so being stuck in the Ergo, stroller and pack n play has not been much fun for him. He does enjoy the playroom especially the push toys but the play room closes at 4pm Friday-Sundays. On other days I had a friend or respite provider take Luke to the playroom or stay with Abe. This will be the first time I leave both boys under the care of the respite provider and the Abe under the care of the nurses. Abe has mobility restrictions, no walking, crawling or standing unless in PT but he did enjoy riding in the little red car at the playroom. Hopefully soon enough he will be allowed to crawl again because on Friday he really wanted to get down and crawl around next  to Luke. Abe does have some pain but is not always developmentally able to say that he is in pain but will start crying and not tolerate being able to move around. Eventually his pain will subside I know after my surgeries my pain eventually went away but  none of my surgeries were as major and never back surgery so I really have no idea. I do know that children heal incredibly fast and adapt much better than adults do. Monday Abe has a full schedule of PT and OT and respite is coming again so hopefully mommy can get a break. I am hoping to get to bed before midnight since the schedule is so packed but that is exactly what is necessary for full benefits after a SDR. In case you did not check it out yet go to Seattle Children's Website and search "SDR", a video series about the procedure is on their. Dr. Browd in the video placed Abe's VP shunt when he was a baby and Dr. Apkon is his outpatient rehabilitation doctor. She is currently not doing inpatient but said we request her if we wanted to. I appreciate her wiliness to accept an inpatient assignment right now however doctor's need a break too. I am not a doctor but I can imagine having inpatient duty is more time consuming and you work more hours than outpatient.  

Post op day 5

Abe is doing amazing. He made his first trip outside and downstairs yesterday. We made it to the playroom only 20 minutes before they closed but it was better than nothing. I let Luke out of the Ergo and Abe saw Luke on the ground playing so naturally Abe wanted to play to. When I told him I was not sure that he could get down right now due to his surgery and his casts on his feet he became very upset and wanted to leave. They offered him a truck but he said no and  began to feel happy again when paper was offered to him. Luke really needed to run around. Since I was so frazzled from caring for both boys in a non typical environment I completely forgot to prepare Abe for the changes that recently occurred with his mobility. It was a super busy Friday and around 245pm I finally got to get something to eat. I will plan to bring lunch and dinner now especially if no respite care is available that day. The social worker did tell me that a nursing mom meal would be provided for 3 days but unfortunately it's against hospital policy because the sibling is the nursing baby however no one bothered to tell me this until the last minute.  Glenn does have a job so we do receive a pay check but the biggest obstacle was actually getting to go there to get food. Luke enjoyed playing in the water foundation and Abe thought it was hilarious. It was all fun and games in the water until another parent mentioned that her baby playing right next to Luke in the water was just seen in the ER for a stomach virus and diarrhea. Most of  you know I am a nurse and mom of a former preemie (Abe) so just imagine how quickly I got him changed and cleaned up. Another kid from Bremerton area had surgery too so his mother stayed with Abe while I took Luke upstairs. Security approached me as I was trying to get Luke upstairs because it probably didn't look right since I was holding him at distance and trying to get his wet clothes off of him.  Good to know they do a great job at keeping kids safe here. I got a Starbucks treat, a peach green tea lemonade, super good by the way, and Abe a cookie. Getting outside and getting Starbucks seemed to make the busy stressful day a little better. Abe got new super boots (casts) yesterday. He did pretty good but the sound of the saw was upsetting to him and Luke got fussy since I would not let him play in there. The purpose of the casting is to stretch the Achilles tendon so he hopefully down the road he won't need tendon release surgery. Abe points his toes significantly so the plan with serial casting, (every 3 days for 2 weeks) is to help his feet to be a more neutral position. He started PT and OT. He is tolerating being in a wheelchair and his therapy without narcotic pain medications however the last two evenings I have noticed he does not want to move so has required Tylenol. He has a huge oral aversion to oral medications so the first few days were very difficult but seems to except them from nurses. The plan is to wean him off Baclofen but so far I have not heard when this will occur. I have already noticed less tightness in his legs but his right arm and elbow are tight. Today rather than rushing to get here Luke and I slept in, did some laundry and took a break. I sure hope his shoes dry out soon because they got soaking wet. A dog named "Abe" came to visit Abe today and left his picture. Abe is enjoying the cards people made for him.  This week was incredibly busy and stressful but one week is almost over. Thank you friends for all the support this week, staying with me the day of surgery since Glenn was working, coming to visit us, bringing food and small portion freezer meals that are portable and watching Luke. The best advise I can give for any family that might go through a planned surgery for their child or family member: pack some lunch for yourself the day of surgery especially if pregnant or nursing, we had a 4 hour delay and I was starving, bring another adult (preferably a parent) with you if a child having surgery so you can step outside the room to eat since the patient can't eat. They did not want me to leave the pre surgery area even though I had a friend in the room with Abe because she can't make medical decisions for him.Make freezer meals in small dispoble containers that can be microwaved (I made large portion in seal a meal bag, not so handy in the situation we are in right now), arrange child care for you other children, pack non perishable snacks, bring a water bottle to refill and bring your own pillow. I will keep you updated on his progress. Sundays is a no therapy day so hopefully Abe can enjoy some time driving his power wheelchair (I got it fixed so it goes all the way to ground now Thursday and it tore me up to leave Abe but respite stayed with him that day and he did amazing having mommy gone). I felt like a terrible mother leaving him but I had to get the chair taken of and the reason I was gone was for something for him. The lift for the power wheelchair has been shipped, just waiting to get it installed. I can't wait to see him be able to stand and crawl again and potentially walk. I picked up his tricycle this past week. I can't wait to see him get strong enough to pedal again.

Laying flat

Abe had his surgery, in case you don't remember, selective dorsal rhizotomy. We got here early on Monday morning and he was finally taken into surgery around 2pm and was admitted to the surgical unit around 8pm.So thankful I had assistance because Abe could not eat before surgery. I had respite provider take Luke to blow off some energy and eat and a friend sat with Abe so I could go into the hallway to quickly eat a snack. Some of you have been breastfeeding mom and and well if you miss a meal you are super hungry. The anesthesiologist let Abe look at his phone and watch a video about escalators with balls coming down to distract him and make the transition to the OR better for him. Only at a Children's hospital, lol. No disrespect to anesthesiologists but most choose that specialty because less people skills are needed because your patient is heavily medicated and therefore does not talk back. I was impressed that he was considerate and did that for Abe. Abe didn't even cry leaving the room but momma did because my baby was heading to have major surgery, irreversible no going back, hope he can still stand, walk with assistance, ride a bike, potty train and all the functions he currently can do kind of surgery.  The friend stayed with me until Glenn arrived with dinner around 9pm. This surgery requires 72 hours of  bed rest, laying flat only only being rolled side to side in order to spinal fluid leak. He is much more talkative, watching You Tube videos, looking at books and wondering what Luke is doing. He wants to know everyone's name and what level they parked on. He took the paper air plane with him to the OR and his Tiny Super Heroes cape. He has been holding onto a card the same boy that made the paper airplane since his first night. The first day he was very sensitive to noise and light and mostly just slept. He is on a morphine drip to control pain, IV fluids and received a few days of antibiotics to prevent infection. I heard him coughing  then he threw up Tuesday morning and a light bulb went off in my head even with hardly any sleep; Casts were put on both feet to stretch and lengthen tendons. The abnormal muscle tone causes tight tendons. The PT that saw him pre-operatively a few weeks ago already noticed that his muscles and range of motion has improved. He mostly slept all day the 2nd day and really was not himself. Today when Luke and I arrived he instantly perked up and has been awake all day. He has had difficulties wanting to take medication even his normal medications. We are working on this. I sure hope it becomes less of an issue because he will need pain management medications and his muscle relaxer. The plan is to wean him off the muscle relaxer, bacolfen by the time he goes home. This will be great because some of the side effects are constipation and decreased alertness. An adult would not be able to take the muscle relaxer and drive. The nurses and staff have been very helpful and making sure the family is taken care of. We were approved for additional respite and it is a huge blessing. Some of you know our family has been thru a lot of inpatient stays, this is admission number 8. The other 7 were during Abe's first 19 months of life, some while Glenn is around and 3 while he was deployed. All I have to say is wow I was extremely lucky back then that I only had one kid to care for. Caring for 2 kids, especially an active breastfeeding 1 year old is very exhausting. He gets so bored in Abe's room so we have been taking him to play room so he can burn off energy. He just runs back in forth, back in forth pushing toys around. He gets sweaty he is running so fast. Then he takes a nap which is just what his momma needs. His regular respite provider is coming tomorrow for 10 hours and Murphy's Law (mom wants to sleep) Olympic Pharmacy in Gig Harbor has the new arm rests for the power wheelchair.  However this is a blessing that the part come in today, they have an opening tomorrow and I had already arranged respite. It will be good to get this taken care of before Abe needs it for rehab and honestly much easier to get it taken care of without 2 kids in tow. The automatic wheelchair lift has been shipped too and Tricare covered it. Just waiting to schedule that appointment. I will try to update this as I can but since I have 2 kids now I don't have as much time to do so. Please continue to pray for Abe specifically: transition from IV medications (he is even on IV Tylenol, just Tylenol is in IV form now) to oral medications, might need to stock up on Dr. Pepper to help this. I know soda is terrible but if it helps him take his medication then it's better than an IV constantly hooked up. Tomorrow he will be able to sit up for the first time in 3 days, little to no pain (his incision is pretty big on is lower back, ouch), that he does okay with respite provider while I have to get the power wheelchair taken care of far from the hospital and daddy is working.