Rayden's Reason : May 2016

Monday, May 30, 2016

May 26, 2016 "Spina Bifida Clinic Appointments"

What a long day. We left home at 8am and returned at 5:30pm. Rayden was wonderful. He actually does really well for a baby being pulled from doc to doc. I suppose he is use to it by now.

1. Orthopaedics- We were not scheduled to see orthopaedics today but last night we noticed Rayden's left cast had slipped terribly (3rd time so far). Even though neither one of Rayden's usual orthopaedic doctors were scheduled to be in clinic, we HAD to see someone because this left cast had to be removed. We saw Dr. Campion. He was very nice and Rayden seemed to like him. After the nurse cut the cast off we were able to see his leg. Of course we couldn't see his incision because it was still bandaged up but there was no swelling and his ankle looked ok. Dr. Campion examined Rayden's

ankle and said everything looked good for only 1 week post-op. He said casts slip sometimes but Rayden must be a "Little Houdini". So he used glue this time to put on cast #19.

2. Renal Ultrasound-I can not even believe how great Rayden did with his ultrasound this time. I thought he would cry just because he was having to lie down and be still, certainly NOT something he enjoys doing! He was propped up on a pillow while the technician completed the ultrasound. Every time she squeezed new warm gel on his belly he screamed but it didn't last. I held his hands while Michael fed him little oyster crackers and he just watched the screen. It was over before we knew it and Rayden didn't seem to mind at all.

3. Urology-Dr. Ross said the ultrasound showed a little difference in the kidneys from the last measurement but she's not worried. She is going to follow up with another ultrasound in about 6 months. She was also very pleased that we took Rayden to the nephrologist and got his blood pressure under control. Rayden's high blood pressure is due to his kidneys not functioning properly so she is going to do another urodynamics study in the next couple of months. This procedure looks at how well the bladder, sphincters, and urethra are storing and releasing urine. It focusses on the bladder's ability to hold urine and empty steadily and completely. It can also show whether the bladder is having involuntary contractions that cause urine leakage. She also wants to check his Vitamin D levels the next time we do lab work. She said Vitamin D deficiency is common in children with spina bifida because they are not as mobile and have chronic kidney disease. After examination, Dr. Ross said Rayden's hernia incision and testicles look great after the corrective surgery she did in September. She said he looked incredible!! Being the most loving baby in the world, Rayden had to kiss her several times. It just seemed to melt her heart and she begged to take him home with her!

4. Neurosurgery- Melody was impressed with Rayden's progress as well. His head circumference is 48.5 cm growing 2 cm in 4 months. His shunt was still programmed at 2.0 which is good. She is scheduling a rapid sequence MRI scan the end of July to monitor his shunt though.

5. Dr. Alexander-We discussed getting more physical therapy and occupational therapy. With Rayden having a moderate (not mild) physical delay (only performing in the 10 month range) he says this warrants more therapy. He wrote a prescription to send to the insurance company in hopes they will cover more visits so we don't have to pay so much out of pocket. At our last visit Dr. Alexander gave Rayden a goal of saying two words when he returned. Rayden blew that goal out of the water! He was impressed that Rayden can say 12 words! He also wanted him pulling to stand. Well, Rayden met that goal too, even in casts!!! He wants to see him back in 5 months. Rayden's new goals are to double his words, around 25. He said if he wants extra credit he could even try some two-word combinations. He also hopes to see him taking steps with a walker and scribbling with a crayon. We couldn't check his length and weight because of the casts but he weighs roughly 26 lbs.

6. Occupational Therapy-We were asked if we would allow an occupational therapist student to sit with us during all of our appointments today so he could learn how clinic worked. (Rayden was the only patient they had today with a programmable shunt and he wanted to see that as well.) He was a very nice young man and Rayden showed him all the things he could do. The occupational therapist was impressed with Rayden's fine motor skills as well. She showed us some easy to make activities to build his upper arm strength and refine his finger dexterity that we really like using velcro, wooden blocks, and a peg board.

Rayden, Jaxon, Aaron

Rayden is an amazing kid, but he's not the only amazing kid with Spina Bifida. We have been very fortunate to have met and kept in touch with a few extraordinary families. The best part of our trip today was actually spending some time with them. Rayden enjoyed playing with his little SB friends (Super-Buddies). I believe this was the first time I've ever seen him play without me sitting on the floor with him!

Friday, May 20, 2016

May 19, 2016 "Surgery #9"

Rayden's bilateral posterior clubfoot release surgery was scheduled for 7:30 am. Since we had to check in by 6:30 we decided to spend the night at the Ronald McDonald House. We haven't had to stay there since Rayden was in the PICU in July. The renovations are complete and it looks beautiful. We went for a walk outside to look around. Rayden spotted the wagon and just had to take a spin. Trying to get him to sleep was a little difficult but he finally gave in around 10pm.

We arrived at UNC at 6:30am, checked in and went straight upstairs. After a quick goodbye kiss to family, Michael and I took Rayden straight into pre-op. Rayden knew something was going on. He DID NOT want the nurse touching him! He said 'NO' to the ID bracelet, pulse oxygen, blood pressure and weight. Poor thing. We spoke with the anesthesiologist and Dr. Cuomo. She reminded us that she would make a v-shaped incision in the back of his ankles so that as he grows the scar will almost straighten itself out. Then she will have to divide the Achilles tendon in order to reach the other tendons in and around his ankles. She will release ligaments and capsules around the joints and between the bones. This will allow the bones to move into the position they are suppose to go in hopes to ultimately change the final shape of his bones. On her way back out of the ankle she will resect (cut out) a portion of his Achilles tendon, enough that it will hopefully NOT grow back together. She also reminded us that she would make a medial incision as well to release tight tendons on the inner part of each foot. She is worried that his skin will

be really tight so we may have to do cast changes every two weeks throughout the six week recovery. After talking with the anesthesiologists and Dr. Cuomo, the nurse took Rayden away at 7:30. Although this is Rayden's 9th surgery, he has never been put to sleep for more than 1 1/2 hours. This surgery was expected to last 3 1/2 hours. I was really worried. I was also anxious to know if the anesthesiologist could tell if Rayden could feel anything.

Michael and I were very thankful family came to support us during this long wait. (Nanny and Papa Bradley, Nanny Jane, Aunt Patsy and Pamela) After eating breakfast in the cafe we still had several hours of wait time. Talking with them made the time more bearable.

Dr. Cuomo came to the waiting room around 11, much sooner than we had expected. She stated that she and the anesthesiologist believe that Rayden could NOT feel anything, which is good and bad. It's good because it will make his post-op care much easier having little to no pain, but bad because this means he has more paralysis than we originally thought. So a blessing AND a curse... Although this is not what we wanted to hear she did follow with some much better news. She was almost excited when she stated his ankles came up super well. So well in fact that she didn't even need to do the medial incisions as she originally planned!! She said his ankles came up to a great position. (more than 90 degrees!) She added that this was the fourth surgery like this she has done in the past couple of months and by far the most satisfying. That sounded great to me. She also stated that his skin stretched beautifully, therefore we only have to recast one time in about 3 weeks. At that time Rayden will be fitted for new AFO's.

I was called back to the recovery room around 11:10. Rayden was just laying there awake looking around. The nurse said that he didn't seem to be in any pain at all. When I got closer he heard my voice and saw that I was there. He immediately reached up and started to moan. Poor baby sounded so hoarse from the breathing tube. The nurses gave him to me and we offered him some juice. His throat was obviously hurting because after only one sip he moaned even more. The nurse gave him some tylenol and went over the discharge papers with me. Even though they believe he is not able to feel anything they are still sending us home with some heavy pain meds, Valiums for muscle spasms, and a stool softener.

When I opened Rayden's diaper bag to get him some clothes he saw all of his paci 'friends'. He just HAD to have them all. He loved on them, taking turns sucking each one as if he were telling them all about his day. Super precious!

Casts #18 are Carolina Blue this time in honor of our awesome UNC medical staff. Although he still has the bend in his knees, I have NEVER seen his feet so straight! I am so anxious to get these casts removed and see his sweet little feet.

Of course, Rayden slept all the way home and another 2 hours after we got there. I suppose the anesthesia had to get out of his system. When he finally did wake up I gave him some Motrin for swelling. He immediately started crawling around on the floor as if nothing ever happened! I'm so relieved that he is not in any pain, but saddened at the same time.

Sunday, May 15, 2016

May 9, 2016 "Casting #17"

Well after 17 casts, I'd say Rayden is officially a professional!! He didn't cry at all. He just lies there so patiently like a little adult! He even tried to share his paci with nurse Ruth!

Dr. Cuomo put Rayden's casts on this time. She and Ruth made sure to make his knees bend quite a bit. They even used the glue again to ensure that the casts do not slip. Hopefully these casts will not have to be removed until he goes in for surgery.

Dr. Cuomo talked about Rayden's upcoming surgery next week. She discussed some of the steps as to why it will take about 5 hours!!! It will take a while to get him to sleep. Then she will position him on his belly, which will take some time to get him just right. Then she will spend about 1 1/2 hours on each foot. Followed by casting and wake up time. After she examined him she decided to make two incisions instead of one. 1- In the back to open up the capsule of ankle joint and remove a section of his achilles tendon. 2- Even though he has had lots of casting, there is still too much tightening that is folding his feet inward. He will need another incision on the inside of both feet, in the center, to release this tightness.

We also discussed Rayden's ability to feel his legs but NOT his ankles, feet or toes. She stated how she works with her anesthesiologist during surgery. If his heart rate elevates during surgery she will know that he may actually have more sensation than we are aware. This lets her know more about how much he is REALLY capable of feeling. What we feel on the outside is not NECESSARILY what we feel on the inside! She will relay this info to us after surgery and of course will send him home with pain medication. I am anxious to know what his level of feeling may actual be.

May 10

Rayden had an appointment with Dr. Sanderson, nephrologist. She actually mentioned he may grow out of high blood pressure!!!!! GREAT NEWS!! His goal for the top number was less than 110. After only one medication adjustment these past three months he has steadily been under 110. She wants us to continue monitoring his blood pressures twice a week. I was thrilled when she stated that she was actually on call at the hospital on Rayden's surgery day. She wants me to tell the anesthesiologist that she will be there if there are any concerns and she will be sure to check on him. That was reassuring.

Tuesday, May 10, 2016

May 4-7, 2016 "Casting #16"

May 4

Bravery--a quality of spirit that enables you to face danger or pain without showing fear.

Although Rayden is now on cast #16, he has not had a cast removed since he was 6 mo. old. (casts 1-14 were from ages 2-6 mo.) We just knew he would be terrified of the loud saw. Yes, Rayden was afraid but he DID NOT CRY!! He just sat there shivering, clinging to his paci. He is the absolute picture of bravery!!! How does a 16 mo. old child know how to be brave? He acted as if he knew this had to be done and he just had to fight back his fear. He amazes me every single day! The entire time Dr. Narotam was putting on his new casts Rayden just layed back on the pillow as if there were nothing going on. He laughed, talked, and played. Think about it...You lie back. People are holding you down, keeping you still. When they finally do allow you to sit up you have a hard, rock shell on your legs. Casting a baby is so traumatic. But Rayden took it like a grown man!!! I wish I had half his courage.

May 6

Rayden received these cool camouflage casts on Wednesday, May 4th. By Friday evening I noticed that his toes had almost disappeared. This means his casts have slipped and can cause major problems. The cast is now causing more harm than good. I knew they had to be removed as soon as possible. I was amazed that his nurse actually answered the phone at 4:45 when I called. She stated that we needed to go to the ER at UNC to get the casts cut off. Realizing this would be a horrific evening, I thought of my friend, Elizabeth Bass Daughtry. She is a podiatrist here in town. She immediately agreed to cut off Rayden's casts for us. This saved us a long drive (3 hrs. round trip) and agonizing wait in the ER that could have been all night!! I know God had his hand in this and I'm so thankful Elizabeth was there and willing to stay late on a Friday evening for us.

When the casts were removed we immediately noticed that he had two blisters on the left foot (front and back) and one starting on the right foot. Water actually gushed out of them. I'm so glad we got the casts removed. Now he has all weekend to heal before going back to UNC Monday to get re-casted.

May 7

He sure had a good time this weekend with the casts off. In this short video clip you can see him 'walking' on his knees and 'talking' about something! ADORABLE!!!