1st Time in the Pool at the New Place

The weather has been beautiful so we decided to set up the pool today. Jack enjoyed splashing around for a little while and when we were done we managed to wash some of the pollen off the deck!

Wouldn't it be great to sit around in your bare skin again and not worry if you were too skinny or too fat? Babies are the best!

No Major Surgeries Expected for Years

Yipppeeeee! Dr. Fearon and Dr. Price agreed that if Jack's subdural shunt continues to drain as well as it has been doing, Jack will not need any major surgery for a few years. We will have fairly frequent CT scans on Jack's noggin so we can be sure that fluid is not building up. Jack's sleep apnea is a bothersome issue for everyone. Dr. Fearon is trying to delay doing Jack's midface surgery as long as possible because it is much more complicated when performed so young. Also, the earlier it is done, the more likely it will be needed again. If Jack does not do well with the CPAP then the next step will be a tracheostomy. Jack is doing better on the CPAP since we decreased the pressure.

Oh yeah, before I forget....for those of you who don't know what sleep apnea or CPAP is, I copied this from familydoctor.org:
"What is sleep apnea?In some people, the windpipe that brings air into the body is blocked during sleep. This keeps the lungs from getting enough air. This is called obstructive sleep apnea. People who have sleep apnea stop breathing for 10 to 30 seconds at a time while they are sleeping. These stops can happen up to 400 times every night. The consequences of these disturbances can be serious and sometimes life-threatening.
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What is a CPAP device?
One way to treat people who have sleep apnea is a continuous positive airway pressure (CPAP) device. A CPAP device has a mask, tubes and a fan. It uses air pressure to push your tongue forward and open your throat. This allows air to pass through your throat. It reduces snoring and prevents apnea disturbances.
You should put your CPAP device on whenever you sleep, even for naps. A CPAP device does not cure sleep apnea. But, when you use the device correctly, your sleep problems should get much better."

Here is my simplified explanation. Let's break it down. What is apnea? Apnea was originally a couple of Greek words meaning without wind. In other words, it means no breath, no air getting into the lungs. So what does obstructive mean? It is a big word. Obstructive is an adjective (a descriptive term) whose root word is obstruct. Obstruct can be defined "to fill (a passage) with a blockage." We all know what sleep is. So obstructive sleep apnea in my simplified definition means that a person's airway is blocked so that he cannot pass air into his lungs while sleeping. What causes the blockage? In Jack's case, his Apert syndrome causes him to have a narrow airway and extremely narrow nasal passages. When his muscles and tissues relax when he is asleep, the narrow passages become blocked up. When you add any congestion from allergies or a cold, the problem gets even worse because whatever space was partially open can get filled up with the secretions.
So how does the CPAP work? Jack has to keep a tightly fitted mask on his face while he is asleep. It's connected to basically what amounts to a small sophisticated air compressor with humidified air. The machine pumps out a large amount of air that sort of acts like a breathing tube. Think of it like a ventilator but there is no plastic going in Jack's throat. Instead there is a "tube" of air that holds Jack's airway open and allows him to continue breathing all night. Without the mask, Jack's airway partially collapses during sleep and he cannot get in enough oxygen which would cause heart, lung, and brain damage.
We are hoping that Jack will continue to make progress on tolerating the CPAP and we will all get a lot more rest.

So what's the next step? We have to contact Dr. Stager about doing Jack's eye muscle surgery. Right now, we are hoping that Dr. Stager will be willing to schedule Jack in about 3 months. That way, we can have our CT done in two months and if Dr. Price needs to do anything, she and Dr. Stager can coordinate so Jack requires only 1 anesthesia. We are hoping she won't need to do anything and Jack will have eye surgery by Dr. Stager and deepening of some web spaces and toenail ablation by Dr. Fearon.

I know we need more pictures and I promise to post some soon!

Home Sweet Home

We're back and very tired. I'll post more tomorrow but just wanted everyone to know we're home!

Good News So Far

Things are looking great so far. Jack did very well with yesterday's very long day of appointments. He is such a trooper. He was in a great mood all day and did not even fuss when Dr. Mandijano looked in his ears and listened to his breath sounds. Dr. An, gastroenterologist, said that Jack's endoscopy showed healthy tissue and a normal esophageal sphincter. He took some biopsies of the tissue to see if maybe we could find a cause for the reflux. In the meantime, we will continue Prevacid and every three months, we will try to stop it and see if Jack is any better. Dr. Mandijano gave us some tips on getting Jack used to the CPAP and Jack did much much much better last night. We turned the pressure down a lot lower. I am not sure he really needs his pressure so high. Dr. Price reviewed Jack's CT scans and she was happy with the way his subdural fluid is draining. This morning, Dr. Hung was happy with Jack's recovery from the tonsillectomy. He gave us a recipe to clean out some wax from Jack's right ear tube.We will see Dr. Fearon this afternoon and talk about what our next step will be. I'll keep you posted.

Back in Texas

While we are here in Texas, you can reach us via email at jackupdate@bellsouth.net. In the meantime, I will be emailing updates to the blog.
Last night was another difficult one. Jack dropped his oxygen saturation level while using the full face CPAP mask. He was using every muscle in his little chest and abdomen to try to suck air in. His oxygen levels would drop down to the 30s and 40s hover a few seconds and then slowly ascend back up to the upper 90s. Then a little while later, he'd start all over again. We called the pediatric pulmonologist on call and he did not seem to believe what I described to him. He actually told me that what I described was not possible. I explained that my husband and I were both nurses and Jack has followed this same respiratory pattern in the hospital where it was documented and I knew that it was not only possible but happening as I was speaking to him. After thinking it through, he told us to try increasing the pressure setting by 1 cm H2O for 20 minutes and if it did not get better then to decrease it back down 1 cm H2O below the original level. He actually did much better on 7!
cm H2O. He did not drop his saturation level but there were times that he seemed to be "working" to breathe. I just hope we get this worked out soon. The CPAP is supposed to make him rest better but so far we are all losing sleep! Hope to have good news to post tomorrow.

Tough night

Can you say "exhausted"? That's our word for the day. Jack became very congested and could not breathe through his nose at all last night so the CPAP was not helping at all. He kept desaturating and waking up pulling the mask off. There was a fight in our bd every hour to hour and a half last night.
We have high hopes for tonight. Our new friend, Bruce, brought Jack a new mask that covers his nose and mouth. David and I were very impressed with how well he worked with Jack. He got the new mask fitted and then said let's hook up the CPAP to make sure that it fits right and there won't be big leaks. Jack actually just sat there watching his Baby Einstein video and then fell asleep! It was amazing. We are hopeful that we all will get some rest tonight.

CPAP night 3

Last night, Jack desaturated (dropped his oxygen levels) even with the CPAP properly in place. It seems that Jack is so used to breathing through his mouth that he did it even with all the pressure pushing through his nose. I called the wonderful people at Respiratory Sleep Associates. Bruce, a respiratory therapist, met Jack and I at home at 5 pm so that he could fit Jack with a chin strap and so we could try some different headgear. The new headgear he brought does not really work for us but, as you can see pictured, the chin strap is doing its job so far. Here’s hoping for a restful night of sleep!

Going to sleep ain't easy

Poor Jack may have developed a fear of going to sleep. I think he knows we are going to put stuff on him while he is asleep and he really does not like waking up with a mask on his face and a pulse oximeter on his finger or toe. He had the hardest time getting to sleep tonight. Took about an hour and he was so tired. I know that I'm doing the right thing by being very diligent about getting the CPAP positioned correctly and getting it on him BEFORE he gets too deeply asleep and has an apneic episode. That does not make it any easier when your baby is crying.

I try so hard to be attentive to Jack's wishes as well as his needs but it's a very hard tightrope to walk. I feel like God has planted motherly wisdom in me somewhere and sometimes little parts of it eek out and I know what to do but so much of the time I can't hear it because of all the conflicting noise that I hear on how to raise a child "right." How/when to get the CPAP on is just one more of those things on the list of things I had no idea I would need to know as a mother.

Third times a charm

So Jack is currently getting his third trial of CPAP at home. He got unusually sleepy and even came in from OUTSIDE to take a nap. I had trouble getting that other cap on him. Basically, he became hysterical and I was having heart palpitations trying to keep the mask on and calm my sweet baby so we just called it quits. I got him calmed back down. After he was asleep, I decided to try the other type of head attachment they used in the sleep lab. It was much easier to get on him and Jack is resting comfortably now for over 30 minutes. 30 minutes used to be a long nap for Jack. I just hope that he does not nap so long now that he wants to be up all night!

Beginning the blog

First post! I'm excited. Jack is doing more independent walking. Now he is not just walking back and forth between Mommy and Daddy. We got him to walk from the bedroom down the hall to the office. There were a few starts and stops but he did it! He is amazing!!!

(Notice the t-shirt says "I do all my own stunts")

Last night was our first night on CPAP at home and we think that it went pretty well. By this morning Jack was already tolerating it much better. He actually touched it without trying to take it off. We need to tweak the settings a bit to keep him from getting so dry. We slept much better here at home than we did in the sleep lab.