Wednesday, August 6, 2014

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.

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