More Emotions

As I re-read my earlier post and thought more about my feelings I had this morning, I couldn't help but get upset with myself. I know I am only human, and those feelings are normal for parents in our situation. But, playing in the snow, walking, running, jumping on a trampoline, playing soccer, etc., are the very LEAST of the things we wish Nate could do. I wish Nate could breathe without a machine; cough and blow his nose without machines; swallow so he could eat foods and drink by his mouth, instead of through a button in his stomach; swallow so he wouldn't choke on his own secretions; scratch an itch he has with his own hands; and, be able to talk so we could help him better and understand what's wrong or what he needs. These are the MAJOR worries. Sure, we would love Nate to be running around playing, but his HEALTH is MUCH more important than making a snowman!

This site is a great place to vent and thanks for listening. But don't worry, you won't be reading posts like this very often, because we are a very optimistic family and we have FAITH....faith that the Lord hears our prayers every night asking for all of the wishes mentioned above; Nate's complete healing; and, a cure for SMA. And most important of all, we know He hears our THANK YOU's for blessing us with Nate's life.

Jennifer

Bad Night, Good Day

I am always reluctant to post that Nate is doing better. Actually, he is doing better today and in general. However, he had a bad night. Trey and I were up all night with him. He was crying, very uncomfortable, and desatting all the time. He was on oxygen all night and we would turn it down, then have to turn it back up, etc. We really aren't sure what was wrong with him. His new bi-pap functions differently than his old one and we think it's not working like it should. We finally changed to the old bi-pap in the middle of the night, but he still continued to fuss some and needed O2.

Then this morning and so far today, he has done very well. No O2 needed and he is in a good mood and seems comfortable. We are so happy about that!!

We have a lot of snow here and when I got up and went outside to hear lots of kids playing in the snow and having a great time, I got very emotional. Of course, all I could think was "I wish Nate could be out here having fun in the snow". Sometimes, my heart aches for all the things he can't do like normal children. In the winter, I wish he could play in the snow. In the spring and summer, I wish he could be out playing, jumping on a trampoline, playing soccer, etc. I know that Trey and I notice things that normal children can do more so than others notice it. We realize that, to most people, those things are taken for granted and we wonder if they know how blessed they are. Then we grieve for Nate. But it QUICKLY passes. All we have to do is go see Nate, see how happy he is, that he doesn't know any different and he is special in his own way. He doesn't care about those things other children can do, so why should WE!!!! He's happy and has a wonderful quality of life. He CAN do things, he can do a lot of things! And we celebrate all of the things he can do, even if they are minor to some people, they are MAJOR to us! We couldn't love him any more or be more proud of him!

I got over my emotions, and thought OK, so what that he can't play in the snow. He can enjoy it!!!! So, Trey and I headed out to build Nate a snowman outside his window. He watched us and laughed and made lots of sounds. Just because he can't build a snowman, doesn't mean he can't have one. He loves it!

Pics of Nate's Snowman

Doing Better

Nate is doing much better! Dr. Carey called last night and said his chest x-ray looks good. They are still not completely clear, but his lungs have improved. He is on minimal oxygen now, usually just when he's in a deep sleep. He is in great spirits and happy as ever!

We got a new bi-pap machine and we are still adjusting to it. It has a heated humidifier built in and that seems to be helping his nose problems.

He had x-rays done of his legs Monday. The right leg is completely healed. The left leg is in the "healing process". It doesn't seem to be bothering him as much as it was in the hospital.

We are still keeping him "bedridden" until we are sure he is well and his legs are completely healed. He watches TV and movies; we read books; and he is able to use his slings and kick his legs to music. As long as he is feeling good, can breathe well and is not in any pain from his legs, he doesn't care what he's doing - he's happy and content just being comfortable and loved.

We are snowed in here. We didn't have nursing last night, today, and won't tonight or tomorrow either. That's okay though - Trey and I can handle it and we are enjoying some quality time alone with our little guy.

We hope Nate can resume school next week and maybe get back to his normal routine, and we can get him out of bed!

Thanks for your prayers....we know they helped Nate get over this illness and all the rough times he's had in the last month. We appreciate it!

Jennifer

Picture of My Sweet Big Boy- Mommy Loves You!!

And she loves your daddy too - very, very much!

Picture of Nate With His "Vest" On

For those of you who don't know, the Vest is a medical device that vibrates the chest and lungs to loosen up secretions. It is used primarily on people with Cystic Fibrosis, but works great for SMA children also. It has been a very necessary piece of equipment in Nate's care.

Pictures of Nate and Daddy

Thanksgiving Update (A few days late...)

Well, it is hard for me to believe that the Thanksgiving holiday is about over. The last couple of weeks have been pretty much a blur as we rushed from home to the PICU to work to the PICU to home then did it again the next day and the next and the next. It has been great to have Nate home from the PICU and we both believe that it has helped him improve.

As Jen’s last post stated, Wednesday was a tough day for the little guy and that continued on Thursday and into Friday morning. All day Thursday, he ran a fever, had labored breathing, had very congested nasal passages, needed supplemental O2 and just looked tired. It was strange that for most of the day, Thanksgiving Day didn’t really seem like Thanksgiving at all. It seemed like a regular Saturday for us in that we were so focused on taking care of Nate and worried about him. Nancy and Jeff came over late that afternoon to have Thanksgiving dinner with us. We enjoyed a catered Thanksgiving Dinner from Honey Baked Hams sent to us by Craig, Katie, Sarah, Alex & Ryan Lengyel. As we sat down to eat, it finally began to feel like Thanksgiving…THANK YOU, Lengyels!!!

Friday started off the same as Wednesday and Thursday…fever, labored breathing, junk in the lungs and the need for supplemental oxygen. About 1:00PM, we did a breathing treatment and coughed Nate. As we have said before, Nate’s nasal passages have been blocked up with mucus, drainage and bloody clots from having to suction that stuff out. While he was in the PICU, we decided to just leave his nose alone and not suction it out anymore in an attempt to let it heal. We have been doing saline treatments in the Nebulizer plus using a humidifier on his BiPAP to help moisten and loosen the stuff in his nose. While he has been at home, we have been using an Otoscope to look up his nose and could clearly see the clots and plugs.

After a couple of “coughing sets”, he had such little airflow out of his nose that we decided to use a suction device called a BBG on his nose. This device works much better than a Little Sucker or a catheter because of its design; it does not go very far into the nose and does not cause any irritation. Well, I squirted some solution into Nate’s right nostril while Jen suctioned the left. We were able to suction out a huge plug / glob of mucus / bloody clot. We quickly did the same thing on the right side and got out another one. You could almost see the relief in his face after those things came out!

The rest of Friday and all day yesterday, Nate was much more his normal self. He has been much more vocal, the airflow in & out of his nose and lungs sound much better and he has not needed any supplemental O2 at night. I cannot begin to explain how important it was that we got those plugs out of his nose. Those could easily have gone down his throat and blocked his airway again causing a repeat of November 5th. Additionally, the infection these could have caused if they had gotten into his lungs would have been terrible.

As I sit here writing this update, I can hear Nate making all kinds of sounds while he is back in his room with his VEST going. He is at the opposite end of the house and the baby monitor is not anywhere close to me. This is a great thing and something we have been looking forward to for several weeks!

As I reflect on recent events, it is easy to see a few of the things that I am thankful for:

NATHAN – It is hard to believe that a 3 year old could teach his parents, his family and his friends so much about Life. It is supposed to be the other way around but Nate has a special mission with his life. His strength and his spirit are so extraordinary and I am so very thankful that he is my son.

JENNIFER – I could not ask for a better wife and mother for my child. The love and care with which she approaches our life with Nate is amazing. It is hard for others to understand the physical and emotional toll that is exacted upon us each day as we care for Nate. This is not exactly the life we dreamed about and planned for but we would NOT trade it. Jen, you are the BEST and I am so thankful that you are right here beside me & Nate.

FAMILY & FRIENDS – Nate, Jennifer and I have the BEST SUPPORT SYSTEM one could ask for! Your love, concern, actions, thoughts and prayers have been so important to all three of us. We cannot begin to THANK YOU enough for all that you have done and how much it has meant to us over the last 3 plus years.

I hope all of you had a great Thanksgiving and I thank you for checking up on Nate!

Trey