Glad to be home

We are very glad the he is home safe and sound (as well as Mom and Grandma). His appetite has seemed to have returned (as you can see).

At home in KC

Thursday, 13 November 2008:

J.M. slept late and was supposed to stayed with Grandma at the house in the morning, while Mommy went into work to take care of a few things. Instead, he decided that he wanted to go with Mommy to work and "see" everyone. He is still sore in his neck, but is up and about and active like a normal 3 year old.

At the house, D5 & travel home

Today is a big day, J.M., Mom, and Grandma will travel home today. I will pick them up tonight, so it will be a nice reunion.

Update #1:
I picked them up and the plane was slightly early (for a change). J.M. seemed a little unsteady since he had not be up and about for a while. He does not need to ware a bandage on the incision area anymore. Mommy said he was very "chatty" during their layover at the airport and flight from ATL to MCI. I am very thankful to Holli and Joel for the hospitality that they extended and making us feel like we were at home. It sure was great to see them again and be with my family.

At the house, D4

J.M. had a good night and slept reasonably well. He has not requested any pain medication and he had some solid food for breakfast. He will see Dr. Oaks for the follow-up examination at 10:45 AM.

Update #1:
The examination went well with Dr. Oaks. He gave instructions for follow-up, wound care, etc. J.M. has continued to convalesce and gradually get better. He still has not requested any pain meds, thus this is a good sign. They will be traveling home tomorrow.

At the house, D3

Today was a pretty good day, no up-chucking for 24 hours (I'll try to keep these comments to a minimum.) He sipped Gatorade in the morning to help keep him hydrated. This evening he sat up and ate pizza with Jake and Max and when I called this evening he sounded in good spirits. He has not wanted any pain medication. Tomorrow he has a check up with Dr. Oaks. I'll keep you posted.

At the house

Saturday, 8 November 2008:

We brought him "home" to a fantastic house nearby and got him settled in and he rested. I headed to the airport and met my mother-in-law and passed the keys and gave direction to the house. He rested throughout the afternoon and ate a little and held it down.

Sunday, 9 November 2008:

He had a couple of bouts of nausea (vomit), once in the morning and evening. He is getting fluids and staying hydrated. The key is for him to take it easy for a while and intake things like pedialite and peach syrup. I spoke with him and he sounded okay. I miss my son and what him home back in KC.

At the room, D2

He has had a pretty good night. He struggled for a while late (about 11:30 PM) and was not going to sleep very well. He was allowed Valium to help him relax and I requested it to get him to sleep better. I believe that he will be discharged today.

Update #1:

The doctors came in early and did their rounds. He was released to go home (local) and Dr. Oaks wants to see him on the scheduled visit on Tuesday. He had a good breakfast and ate quite a bit. I think we were more excited about going home the J.M. (Not really, but it's hard to tell by the look on his face.)

At the room

J.M. had a pretty good night, no dry heaving or vomit. Both of us dozed pretty good for a few hours through out the night. He stayed on a course of pain meds alternating between Tylenol and ibuprofen and had a dose of Zofran this morning. After the ibuprofen on an empty stomach he would get the nausea, so I don't think he will be having that anymore. As long as he continues to take in liquid and keep it down he may be able to be discharged today. He had some more popsickle and some apple juice. We took him for a ride down to the lobby to see the Christmas decorations. The doctors want him to be more active and we will be helping him do that.

Update #1:

He had been in bed pretty much the hole day. His pain had been managed as needed with Tylenol. I went to a nice area for adults and had a great 4 hour nap and when I came back at 6:30 PM after a wake-up call from J.M. he had some solid food for supper and has been keeping it down. He has had no Zofran this afternoon and this is now as needed. He in not on any IV drip, so he needs to stay hydrated and thus far has been drinking fluids. I'm thinking that if he has a good night...we are out of here tomorrow.

Into a room

J.M. has been moved into his own room. It took a while, but one on the floor where they wanted the neurology patients finally became available (we are thankful). He has been taking his pain meds at regular intervals and had a dose of Tylenol at 9 PM. The pain meds are now as needed. He had another does of Zofran at around 7:30 PM and a pop sickle at 8 PM. So far so good. I am staying the night to keep him company and help out.

Some background on why we are in Alabama:

J.M.G. is a forcep delivery baby with birth trauma. Mom was in labor for about 12 hours and she and J.M. were not showing any signs of stress. We were informed that insurance would not pay for a C section, thus the option was use of a forcep. We preferred the C section route at the beginning. He then spent the next ten days in Children's Mercy recovering from a fractured scull, needing a blood transfusion, and jaundice. We have done all of the medical follow up and at two years of age they pronounced that he was doing well and meeting normal milestones. That is when we started to notice the muscle tone issues with his left leg and the neurologist scheduled an MRI on August 11 for follow up. The MRI professionals found the syrnix and he was diagnosed with the chairi 0

At the PICU

Here is a picture of J.M. resting comfortably last night with Stanley. I want to see and comfort him and let him know that his Mommy and Daddy LOVE him VERY much.

Update #1: We were in with him from 8:30 AM - 2:00 PM and he is still somewhat nauseous. He spent part of the night dry heaving and we believe he equates the pain meds with the bad feeling in his tummy. We have encouraged him to take the pain meds so his head will feel better. The 4 mg's of Zofran does seem to be doing the job. He is now the "healthiest" kid in the PICU and on the top of the list for a room (a GREAT sign and relief). What Dr. Oaks did not tell us is that the area where he performed the surgery may cause some nausea. Dr. Oaks wants to see him keep everything down for a day before he will release him from the hospital.

Day of the surgery

The surgery went fairly well...it lasted about 1 1/2 hours. Dr. Oaks found what he wanted to find, the substantial scar tissue from the birth trauma. He made an opening about 10 mm in the base of the scull and did not think it was necessary to put in the plastic conduit (tube) to facilitate better drainage in the future. He is in recovery and will be in pediatric intensive care unit (PICU) overnight as a precaution. We will be able to see him at around 12:00 PM.

Update #1: We were able to see JM briefly when he was taken into the PICU and he looked pretty good considering the circumstances. They were settling him in and they recommended that we get something to eat. We came back later after lunch and he only had the oxygen (O2) being provided to his nose, one intravenous line and and arterial line. They are providing pain medicine (Motrin & Tylenol) every three hours.

Update #2: We were in to see him from 4PM - 6PM and he is still dozing in and out. They were encouraging him to go pee in his pull-up diaper and he did not want to do it. We had to reassure him that considering the circumstances that it was okay to go pee pee and he did. He wanted to move his head from the right to the left and when he realized that it hurt, he did not want to do it. The nurse performed her magic and we helped move him to the left side and got him settled in to watch Veggie Tales with his buddy Stanley. The gave him a dose of Zofran (2 mg) about 6 PM to help with the nausia. We went to Newks Cafe for supper.

Update #3: When we went back after supper, they would not let us in until 9:30 PM due to a new patient being brought in and settled. The regular scheduled visit time is from 8PM - 10PM. We stayed and helped the nurse since he was still feeling a little nauseated and was throwing up a bit (they measure everything!). They increased the dose of Zofran to 4 mg's at close to 11 PM. Hopfully that will help the little guy.

Dr. Oaks initial consult

Today was the day for the initial visit with Dr. Oaks. He is the guru that Dr. Greene from Children's Mercy Hospital recommended we go see. Dr. Oaks has treated over 400 patients with chiari 1 & chiari 0. What John Morgan does have is a syrinx, which is cerebral spinal fluid (CSF) that has been collecting and pressing on the spinal cord. CSF is normally produced in the brain and flows out through the base of the scull into the body. Dr. Oaks does not technically view JM's case as a chiari 0, however he is treating the symptoms as if it were. What he expects to find is scar tissue which is causing the formation the syrinx. The operation is to remove a small amount of scull at the base to allow for the CSF to more evenly flow out of the scull. He will create an orifice using some tissue from just below JM's scalp to form a "sling" to hold back the sack that surrounds the brain. The scar tissue does not show up in the MRI that was performed on August 11. If there is significant scar tissue, Dr. Oaks may insert an additional conduit (tube) to allow for better flow of the CSF out of the scull into the body. The question remains, is the syrinx causing the issues with JM's leg? We don't really know at this time. There are risks involved with performing the surgery, however if we do nothing at this time there could be additional symptoms due to the syrinx pressing against his spinal cord. We have been in communication with JM's pediatrician, Dr. Grossman, and he is supportive of our decision to perform the procedure. John Morgan will be admitted at 6:00 AM tomorrow.

Please keep us in your thoughts and prayers during this difficult time. Much Love from us...

As a humorous aside, Dr.Oakes went to the University of Missouri and waited tables at Stephens College to meet girls. For those of you who don't know, Stepahnie went to Stephens College.

J.M.G. On the ground

John Morgan is on the ground in ATL. A nice first day of travel, no major hick up's just a couple of plane rides and we were in Birmingham, AL having some lunch. After a nap, we spent the evening playing with Jake (5 years old) & Max (3 years old) just having a lot of fun. Many thanks to Joel and Holli for being so hospitable and having us stay with them.