Sleep Study Details

Sleep study went well and showed us several things. First, he has central apnea. This means that his brain forgets to tell his body to breathe when he is in REM sleep. It also means that he has very shallow breathing. However, the majority of the time he does great. They are sending us home on an Apnea Monitor and possibly Oxygen. They will make the decision about O2 tomorrow. Tomorrow morning he will be going under anesthesia again to do an MRI on his brain and brain stem. They are looking for something in his brain stem that could be causing this. (It has a name I just can't remember what it is :) ) If he has this, it would cause these episodes to increase and will eventually need neurosurgery to take it out. Also this could explain the severe reflux etc. We will remain here until Tues and then hopefully go home. I will be in Orlando all week training and driving back and forth. I will update the blog as soon as I can. Thank you for your continued prayers and words of encouragement. Have a blessed week!



This looks like a comfortable way to sleep?????? What a trooper. :)

Eventful Night

Mason had a rough night last night. Around 10:00 his 02 levels began to drop. Every 30 to 45 min. we had an episode. He hit the lowest they've gone at 66. They're not supposed to drop below 93. We are discouraged. We were so hoping that all of this was a result of the pain med. but there is no way we can blame it on that now. Dr. Kriseman came in and is trying to get his sleep study moved to tonight. We are praying that can happen and we can get some answers.


On a positive note, Mason ate orally for the first time in 7 mth. He's struggling with the suck of a bottle but he got it down. He also ate some pears. He loved them!!! So cute to see him doing this. I needed a little pick me up and this was the perfect thing. Great job Mason, we're so proud of you!!!

Updates

Dr. Kriesman (pulmonologist) came by and has ordered a sleep study for Mason Friday night. This will tell us why his levels keep dropping. Looks like we'll be here a few extra days. From a surgery standpoint he's great and they have now handed us over to General pediatrics. Soooo we'll wait and see. Mason took a nap today for 2 1/2 hours and his numbers didn't drop once. Who knows???? We're thankful for every little victory. Thank you for praying.

Asking God for a Miracle

This is written with a huge sigh and slight discouragement. Yesterday, Mason had a great day. You'll see in the pics below he played a-l-l day!! To the extent that napping wasn't in his plan. All of this was fine and it was fun to see him so excited and happy about life. I've mentioned several times his oxygen levels. This has been an ongoing problem since we've been here. All the docs have been blaming it on the pain meds. He has officially been off them since Sunday. He had been off morphine but Sunday they removed his chest tube and gave him a little b/c the procedure would be painful. Yesterday, he received one small dose of Tylenol to help w/ his teething etc.. Last night his oxygen levels went down 10 times in 8 hours. (Not good) His levels should not go past 93 and he was in the low 70's and 80's. The worst part is he can't get himself to recover unless stimulated. Our GI doc is worried and we are waiting to hear from our pulmonologist. What this would mean is they would have to send him home on an apnea monitor w/ oxygen. We had one when we were sent home from the NICU. After two weeks of using it, we quit. It sounds like a fire alarm going off constantly. It malfunctions alot and can make life complicated. We're not sure if he has always done this and we didn't know or if this is a result of the surgeries. At this point, surgery shouldn't be an issue. We are asking God specifically to heal this area of his body. I'm sure you could understand that sleeping isn't an option when you think your child can't breathe. Kevin and I can handle it for a few nights but long term this could be a problem. We're also afraid of what effects this has had on Mason if it's been going on for a period of time. We will let you know as we receive answers. He looks great and you would never know he just had major surgery. We're praising God for a great recovery. Thank you for keeping him in your prayers. With Love, The Whitehouse Playing with his musical instrument! He loves this thing. The hilarious part is he'll hit himself in the head with it an then totally crack up!! Oh to be a kid. :)

I love Aunt LeLe!!

Finally holding Mason

After 41/2 L-O-N-G days, we finally we're able to hold Mason!!!! They were able to remove the chest tube. Mason was such a champ. Didn't cry once! Mason, You're the Man!!!

Making Great Progress

Mason is finally being fed food through his Gtube. He's getting it in small doses but at least it's something. He had really good night. Oxygen levels went down several times but they were able to get him to recover quickly. Chest tube is still in but they turned it off and we should be getting xray results soon. He had fun playing with Grandma this morning. Also great news he went #2 twice!!!! We feel that we are on the upswing. You will be able to see by the pics below that he is looking much better. Thank you for your prayers. They're working!!! Praise the Lord.

Overall great day!

Mason's day was much better. We had only two setbacks. One was his oxygen levels went down again. Any time he is sleeping he will have to receive oxygen . The second is his chest tube. They took an xray of his chest and saw air still in the area of his lungs. This must be cleared out in order for him to begin eating. They hooked him back up to the pump and tomorrow morning they will do another xray to see the progress it has made. Mason was happy today. He laughed and started to talk a little and enjoyed playing with his chains on his bed. Thank you for all the bday wishes. I had a great day and seeing Mason's smile was the perfect gift.

Specific Prayer Needs

We have had an eventful evening to say the least. They moved us out of ICU late this afternoon to our favorite floor 8 south!! We've come to adore our nurses and staff and feel like we're right at home. Around 5 Oclock Mason got upset and held his breath for about 10 seconds. His lips went blue and his oxygen levels went down around 85. His alarm went off and our nurse came in to get him regulated. Didn't really think much of it. She told me that if it went below 93 to find someone immediately. They gave him some pain meds and he fell into a deep sleep. He was so peaceful looking. Around 7:00 his alarms went off again and I noticed his levels dropping to 79. We called for help and within seconds there was about 20 people in our room. While they were in there his levels went down to 69. They sent up an ICU doc and surgery doc. both said we would need to monitor him closely and if it continued we would have to go back to ICU. Around 9:00 they turned off his oxygen again assuming that he had stabilized, within 2 min. his levels were back down to 69. We turned back on his oxygen and are leaving it on for the evening. We need to specifically pray that his levels can stabilize on their own. We had some issues with this in the NICU. I'm assuming that since this surgery was a big one his little body is having a tough time regulating. If you could please keep this issue in your prayers. It was a scary night to say the least. We're so grateful for doctors and nurses that are taking great care of him. We will try and update you throughout the day.

Updates on Mason

First, I want to thank and praise our Heavenly Father for allowing yesterday to go smoothly. We are so grateful that they were able to finish everything they were planning on doing. Next, I want to thank all of you. Your comments on Facebook, texts, calls etc. have meant the world to us. Knowing that you are praying for our little boy is humbling and so appreciated. Thank you!!


This morning they took him for some xrays of the surgical sight and everything looks great. There is still a considerable amount of blood and liquid draining from his chest tube. That will have to subside a bit before we can leave ICU. He is still on morphine every two hours. He will need to be able to tolerate the pain a little more before we can leave ICU as well. He is sleeping lots and uncomfortable. I did manage to get two smiles from him this morning. That made my day!! Right now I think he is constipated. Since he can't have his normal medicine, they are going to give him a liquid enema. This should allow him to be a bit more comfortable.


Yesterday Dr. W came by to check on Mason. Kevin and I were talking about him and why he means so much to us. To sum it up he treats Mason like a person not just another patient. This week is not his rounding week, to come and see us means he is coming after hours. We are forever grateful to him. It's people like him that make this journey a little easier. He told us that we will continue to feed Mason through the G tube for the next couple of weeks. They removed his J tube during surgery (forgot to tell you that:) ). Then, in a couple weeks ,when he is nice and healed we will begin oral feedings. We'll need to do a swallow study again and watch for aspiration but we're praying that this will begin a new way of life for him. Finally, I can start using my Babycook and puree away!!! :)

The prayer requests now are: 1. We can be released from ICU 2. Pain will subside 3. When we go to feed him orally, he will remember. (This is actually a huge request b/c children with neuro problems this can be a HUGE deal)

2 Thessalonians 2:16
"May our Lord Jesus Christ himself and God our Father, who loved us and by his grace gave us eternal encouragement and good hope, encourage your hearts and strengthen you in every good deed and word."
(Thank you Maggie for this reminder)
Mason and his little lamb that he loves!!

Update on Mason's Surgery

Mason is now in recovery. Surgery took a little longer than expected. Dr. Danielson said everything went well. The plication (diaphram part) took longer b/c they were trying to get the lung on the right side to collapse so they could operate easier. That didn't work. So Dr. D would have to wait until his lung was down and then work. I hope that makes sense. He explained it like playing put put with a windmill. You have to wait for the opening to hit the ball. They are going to put Mason in the ICU for at least tonight. We are still waiting to see him. We will let you know any updates that we receive. Thank you for all the prayers and words of encouragement that you have shown Kevin and I. We appreciate it from the bottom of our hearts. Sorry if any of this doesn't make sense. We're going on a couple hours of sleep. :)
Love you,
The Whitehouse

Mason's Surgery

Mason's surgery is scheduled for 8:45 tomorrow morning. We will be checking in at 6:30 to get some labs done etc... We know that you are praying and we are forever grateful. We are nervous and anxious but know that God has him in His hands. Dr. Danielson will be performing the surgery. I will update the blog when he is resting in his room.

New Updates

I wanted to give you a couple updates before we head to the hospital next week. First, we've posted some new pics of Mason and some of the fun things we did in the month of June.

June was a crazy month with wonderful high's and some hard low's. By the end of the month I was emotionally exhausted. The last week in June we went and spoke with Dr. Weldon. (IVF doc) The bottom line is we will not be able to use IVF to have more children.
We thought this would be an option but the Lord has closed the door. I asked God before the appointment to make it crystal clear to us what we needed to do. When we left, we felt peace about our decision. I never imagined only having one child but if that is God's plan for our lives we're o.k with it. Right now adoption has not been layed on our hearts but we're open to it if God chooses to do this down the road.

That night, as I lay in bed, a flood of emotions came over me. Sad, disappointed but an incredible peace. This year, more than ever, the Lord has taught me to walk by faith and not by sight. What I see is worry and confusion. Worried that Mason would have no one if Kevin and I were gone. Worry that without a sibling he won't have an example. etc.. etc... I'm learning that God sees the big picture. He loves Mason so much and knows exactly what he needs when he needs it. Everyday, I have to lay him down at the feet of Jesus. I want to fix everything for him and give him every possible opportunity to learn and grow. The Lord is teaching me to relax and be patient. (Which is VERY difficult) He will bring the right people into his life at the perfect time. Our job is to let God be God and rest in that knowing He has everything under control.

The next morning I took Mason to get his haircut (Pics below :) ) and the Virtual School called and offered me a full time position. This is HUGE!!!! I've been waiting for this for 14 months. I was so excited. I've been working part time for them this past month but July 26th I will be going to full time. I'm so thankful. So June started off on a high with Mason's birthday and ended on a high!

We will find out next Tuesday what time surgery will be. We are nervous and scared but know that this is the next step. We're taking lots of pics of Mason's tummy before 7 new holes will be added. :( We're praying this will improve his life and the recovery will be quick. We will update the blog with the time of surgery and how everything went.
Thank you for all your prayers. We love you, The Whitehouse

First Hair Cut with Clippers

Mason has had many hair cuts but this is his first cut with the clippers!! Thank you Gin and Talaiya you did an awesome job!

Happy Birthday Mason! These are only a few of the many pics from Mason's birthday. We will put his video together soon to show you everything. We had a great time!

Mason and his sweet friend Ava. (My adopted baby girl)



Mason and Tyler. Soon to be Dr. Sexton. We love you Tyler