7 Months

Today Jake and Luke turned 7 months. In some ways it seems like 5 minutes in other ways an eternity. Jake is healing nicely and he is starting to use his new fingers. He still is waking up a ton during the night which of course keeps us sleepless. He is very happy during the day so maybe he just wants to enjoy life more than sleep through it. In a few weeks, he starts his pre-ops for his head surgery which is unfortunate to come so soon. Feb 1 will be his head surgery at Cedars-Sinai here in LA then his second hand surgery will be May 2 in Boston. A tough first year that will finish just before the boys turn 1. Then we'll have a little breather from the OR. The boys are growing and as you can see in the photo are very happy and love each other.

Jake Has Fingers

Today, Jake got his fingers with the removal of his casts on both hands. He still has plenty of healing left to do as the skin grafts continue to take and the stitches dissolve. But, he has the four fingers in place and the fifth will come in May. Jake was much happier once we were home and of course all he wants to do is put his fingers in the mouth. To prevent possible infection of the open wounds, we aren't letting him until the stitches and fingers heal more. He wears splints now at night to keep the fingers in alignment as without them the scar tissue could pull them downward. He is much lighter now and looked way more comfortable as I put him down for bed tonight. Maybe just maybe he'll sleep a tad better. Well this first chapter is closed and we look forward to watching Jake learn how to use his new fingers and how he adapts. Here's a little photo of Jake tonight....

Phew

Well a rainy Tuesday in Southern California brought us to Cedar's Sinai for Jake's Cat-Scan. After a very long nervous wait, I brought Jake in and held him still as he rotated in and out of the machine. Then we walked to Jake's neurosurgeon, Dr. Danielpour's office. He infomed us that Jake does not have hydrocephalus and everything looked good on the scan. Very relieved. We will see him again for a pre-op on January 23rd and for Jake's first head surgery on Feb. 1st.

Dr. Danielpour said he was relieved to see us looking happier, the last time we saw him Jake was screaming his head off in pain due to reflux. A fellow parent with a daughter who had a bad case he had recommended maalox and it worked and now drew us a diagram as to how to prop Jake up on his side. He believes his lack of sleep is due to discomfort caused by the reflux. It's nice when a brain surgeon's ingenious invention is a pillowcase filled with rice mannered like two saddlebags. We will try it out well at this point I would try anything if I thought it would work. I am sure Jake will find his way back in our bed tonight as its the only way to limit his waking up 10 times a night as we can pat his back and shoosh him back to sleep in 5 vs 20 minutes.

Well next up is Thursday for the cast removal and Jake's first glimpse at his new fingers.

Big Week for Jake

A lot of attention to Jake this week. Tomorrow Jake has a Cat-Scan to ensure that he does not have hydrocephalus. This would mean excessive accumulation of fluid in the brain. The test and meeting with his neurosurgeon is precautionary but the condition is known to happen in Apert kids and Jake's lack of sleep could point to this as a cause. We obviously hope not but look forward to getting a confirmation that he's ok tomorrow.

Then Thursday Jake gets his casts off and will see his new fingers for the first time. We are excited for him albeit there will be much healing left to happen. It is the first step and soon Jake will be sucking his fingers like his brother.

We will update you soon but please think good thoughts for us!
Love,
L & S

Jake's Hands

Attached is a shot taken right after surgery showing the extensive work that was done to his hand. It really is amazing what they are capable of doing. We now have one major hand surgery down and the next one (probably in May) will separate the third and fourth finger to finish the major hand surgery.

1 week After

It's hard to believe it's been a week already since Jake's impactful hand surgery. This week has been tough as it is so sad to see Jake cry when we know he is in pain. Luckily he has great moments as well where he is a happy smiling boy. As if he didn't have enough to deal with, Jake had to be rushed to urgent care the other night as we noticed little white bumps all over his tongue and roof of his mouth. We have been told it's Thrush a common reaction kids have to antibiotics. So now the very medication he must take is causing him to take another medication to counteract its effects and add to his discomfort. This is going to be one tough kid that's for sure. Jake is sleeping in our room in his carseat attached to his stroller. We hope to slowly be able to transition him back to his bed and get him to sleep in longer intervals. A constant project that we won't force until we feel he is ready. Jake will have a follow-up appt in two weeks to remove his casts and finally experience his new fingers.
Stay tuned.

Home Sweet Home

Well we made it back safely. Jake was great on the plane again and continued his charming ways as two stewardesses fought over who got to hold him. He's a smart kid. It was great to finally be home and we came home to ballons and streamers left by Kathleen for Jake's homecoming and my bday. Luke woke up as if he wanted to say hi and it was incredible to hold him again as well. 6 days is a long time to be away from your child. Jake will be in his casts for 3 weeks and then special splints will be made. We will keep you posted to his continued recovery.

We want to thank my Mom and Kathleen for spending the time at our house away from their homes to watch Luke when we were away. We appreciate it so much. We also want to thank my Dad and Stacey who came to Boston to be with us during this difficult time. I also want to thank Ross who had to take care of both of his boys solo when my sister came to support us. Lastly, thanks to all of you who have reached out to let us know you care, it means the world to us and to Jake.

Love,
L & S

Discharged

We are happy to report we are out of the hospital and just awaiting our flight home to LA at 4:45pm. Jake is doing well and we are excited to get home. Hopefully just a quiet flight home awaits.

Recovery Day 2

Today was an interesting day as it was my 35th and rather than focusing on the birthday etc all I wanted was for Jake to feel better. Amazing the perspective that having kids will do to you.
Jake was possibly going to be discharged today but the Dr.'s wanted to take him off the morphine and then monitor how he responded to the pain and transition him to the tylenol with codeine that we will be giving him. They decided to keep him an extra night and we are happy with the decision as it keeps Jake in the hands of great medical care. He is getting better with each day and now is eating and smiling and even starting to be a little feisty. It's such a relief to see him progress in such a short while. The family had left so it was just Sam and I in the hospital spending time with Jake. He is too funny as he loves being in his stroller versus the hospital bed and we wheel him around often. Sam bought Jake a giant Elmo balloon today for his room and he was enamored immediately staring at it often. Tomorrow they expect to discharge us and we changed our flight from the am to the late afternoon to give us enough time to deal with everything. Interesting enough it is snowing right now in Boston and a storm is starting from tonight into tomorrow so we are hoping it is on the lighter side and we don't get stuck here but we can't control that so we will just focus on getting Jake discharged and go from there. One more thing I forgot to mention is that Jake's favorite thing to do is hang out with all the nurses at the nursing station in the stroller. They all know him and he's a smart little guy soaking it up as the center of attention. He no longer is hooked up to any machines and they took out his IV today so looks like all systems go and we are thankful for that.

Recovery

Sam slept in the ICU with Jake last night which was a long night as he was very much in pain and cried most of the night. When I relieved her shift in the early morning, I wasn't prepared for what I saw. Gone was the quiet moaning and now Jake was really upset and crying and you could tell he was in some real pain. The massive surgery he went through was no longer numbed by a procedure called a block in his arms which basically numbed him from feeling in his arms the day prior. It is hard to watch your child in genuine pain when you are helpless to stop it. I had the nurse let me hold him in my arms in his favorite position and it did work at calming him to a degree although he was still crying and in pain. The nursing staff and Dr.'s took notice and decided to put Jake on continuous morphine drip that would self administer the drug calibrated to his weight and portion control. I met with a few of the associate dr.'s who took part in the surgery and they all discussed how much had been done but how great it went. When Dr. Upton came by he had photos of jake's hands before and after and it truly is amazing what this man can do. Jake has a hand with fingers and its a sight to see. This was a pleasant surprise as we weren't able to see the actual as the cast is over his entire hand like a club to allow the skin grafts to heal properly. Trust me when I say Dr. Upton is truly a surgical artist. Dr. Upton did talk about how great Jake's hands will be and also wanted us to know that he really feels that when Jake is done with his surgeries only a plastic surgeon would know he had apert. He feels he is really mild and looks great for a child with the condition. Let's hope this is true.

Anyway, Dr. Upton alleviated our worries that jake would have to leave the hospital today and said as long as he is in pain he would remain in the hospital. He did mention that jake could very well feel like himself by the end of the day. A notion we were very doubtful of due to his agitated condition. Jake did move out of the ICU to a regular room and interesting enough when we we wheeled him in his bed he stopped crying enjoying the ride. We then decided to put him in his stroller to see if that would help and sure enough wheeling him around the floor with his IV seemed to calm him. He was still crying a bit but nothing to the extent of earlier. Then the Dr.'s decided to "bivalve his cast" That basically means taking a handsaw and cutting zig zag lines into the cast to help alleviate pressure felt on his hands. The sound alone is wrenching but Jake was a true champ and only started crying when they had to do the second hand.

Then the joy came. all of a sudden, Jake finally ate his first bottle, then took his first poop, and started smiling and playing with us. It was a complete 180. finally we had our lil boy back. He was in so much pain earlier and thankfully by late afternoon he was himself and doing great. Truly amazing. We just left him at the hospital for the night as he was sleeping sound and we feel we might actually get some sleep knowing our boy is happy again. What a trooper.
We hope to discharge tomorrow and fly home on monday as planned.
Love,
L&S