Monday, December 25, 2006

Ho ho ho...MERRY CHRISTMAS!!!!!!!

Nate, Jen and I wish you and yours a VERY MERRY CHRISTMAS!!!!

Pictures from the last couple of days...

Dinner on Friday night with Uncle Jeff, Nana, Grandpa Wayne, Mom, Judy and Grandpa Jody. Nate didn't take a nap that afternoon and pretty much had a meltdown when we brought him out. We thought that he would go right to sleep when we took him back to bed right before dinner but he entertained us all with his numerous sounds as we ate.

Nate gets to open a present early!

12/21/06 - The Christmas Celebrations continue...

Mommy, Nana and Nate work on a Christmas ornament for our tree...

Nate puts the finishing touches on his ornament...

Nate & Mommy show off his handiwork...

Wednesday, December 20, 2006

The Christmas celebrations begin...

Sorry for the delay in making updates this week! It has been a busy week for everyone so I thought I'd post a few pictures from last Sunday when Pop, Grandma Annie & Aunt Amy came up to Tulsa to celebrate Christmas...
Here is Nate relaxing before his company arrives...

Nate, Pop, Grandma Annie & Aunt Amy before opening presents...

Aunt Amy shows Nate one of the books she got him...

Charlie Brown's Christmas Special was on TV on Sunday night so Nate got to watch it. He seems pretty interested in it at this point in time...

10 minutes later, his interest had waned and Dad had some fun with the camera! (At least it wasn't a Magic Marker Mustache!)

Thanks for checking on Nate and we'll have some more pictures to post later this weekend!

Friday, December 15, 2006

Doing Great This Week!

This week has been great! Nate has been able to be off his bi-pap a little more and his lungs sound really good.

Monday he had school, and we were excited to start it again. But, he cried the entire time and threw a complete fit! It was almost funny. He made a Christmas ornament and we sang Christmas songs. He apparently just wasn't in the mood or was uncomfortable. Oh well, maybe next time he'll do better and actually enjoy having fun with his teacher!

Nate has been in his Kid Kart a couple of times and gone outside to enjoy the nice weather. He practiced in his power chair yesterday and even though it had been two months since he's practiced driving, he hadn't forgotten anything. He drove all around and did awesome! He loved it! The PT and OT were here and couldn't believe how well he did. Then we practiced getting him in his ceiling lift. He tolerated it very well.

Hopefully, today we can go out for a drive or maybe a walk. Since it's so nice, we might try his power chair again.

We are so happy he's doing better and we thank the Lord for his recovery!


Thursday, December 14, 2006

Drivin' my Power Chair!

Here is a picture of Nate practicing his driving skills in his Power Chair this afternoon.

Sunday, December 10, 2006

A fairly busy day...

The day started off a little rough for Nate but ended up being a pretty busy day for the little guy. This morning he slept until about 8:45AM so we really didn't have time to use The VEST and cough him before his 9:00AM feeding. He had lots of secretions and we could hear some wheezing in his chest. Luckily after using The VEST and coughing him at 11:00AM, he did much better.
The highlights of his day were:
1 -- A HAIRCUT -- Mom agreed that Dad could use the shears on the sides and back of his head while Sue could trim the top with the scissors. The haircut went pretty well and he only fussed a little bit while we were turning his head to cut in the back. The end result was a GREAT haircut...short on the sides & back and still some waves/curls on top. Now we just have to find time to get his Christmas picture taken.
2 -- A BATH-- After a haircut, a bath is a necessity! He had a good bath...about 30 to 40 minutes with a lot of kicking and swinging his butt in the water.
3 -- Laying on Mom's chest -- After his nap, Nate came out into the den and laid on Jen's chest while watching the football game. He laid there off his BiPAP for about 40 minutes then we moved him to his Kid Kart.
4 -- Sitting in his Kid Kart -- This is the first time we have been able to get him in his Kid Kart since he got home from the PICU. He really enjoyed watching SpongeBob on the big screen in the den and watched the first episode while off his BiPAP as well. After about an hour or so, he got tired of it and was ready to do something else. We had some fun racing around the house in the Kid Kart and doing "doughnuts" in the kitchen. It was great to see him do so good in his Kid Kart because he has school tomorrow and he'll be in it for that session.
We figured that by now his little butt was kinda tired so he is back in bed with his arms and legs in his slings just swinging away!
Thanks for checking on the Little Man!

Friday, December 08, 2006

Slowly But Surely

Nathan is doing better. He's been able to take a bath every day this week and I've been able to hold him a couple of times. Obviously, he can't be on the bi-pap during his bath or when I hold him, but he's tolerated it very well. He's had some wheezing in his lungs the last couple of days, but nothing too serious. He had another bad night the night before last, on oxygen all night and very uncomfortable and fussy. But, for the most part, he's headed in the right direction. Our next step is to try to get him sitting up in his Kid Kart for awhile. And, hopefully, he will start school again next week. Thanks for checking in!


Friday, December 01, 2006

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 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.


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

Thursday, November 30, 2006

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!


Sunday, November 26, 2006

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!


Wednesday, November 22, 2006

He's Home, Happy, But Still Struggling

I can't begin to tell you how wonderful it was to wake up to Nate's cute sounds this morning, instead of an alarm clock, and rushing around to get to the hospital at the crack of dawn! Nathan is doing okay, he's definitely happier to be home. But, he is still battling and fighting. He has been on oxygen a lot, even more so than the hospital. He needs it continuously when he is sleeping, because he just can't breathe deep enough, even with his bi-pap on. He has been on O2 most of today and his lungs sound really junky. His heart rate is high and his breathing is very labored.

Our respiratory therapist came out yesterday to set up a heated humidifier into the bi-pap. This hopefully will moisten the air and help to heal his nose. Being on the bi-pap, and having to bleed in oxygen, is really drying his nose out. It seems more bloody, crusty and stuffed, even more so than when we were admitted to the hospital. We pray the humidifier will relieve some of those problems.

Dr. Carey discharged Nate from the hospital, knowing he was not 100%, but there really was not much else they could do at the hospital that we couldn't do at home. He had already been on 3 different IV antiobiotics for 16 days or so. He is on Augmenten now and is still getting an extra type of breathing treatment on top of his Xoponex treatments. We continue to do the Vest and Cough him as much as possible.

He is definitely sleeping better at home. He took a 5 1/2 hour nap yesterday and slept all night. I don't think he slept well at all the whole time he was in the hospital, and as we all know, when you are sick, rest and sleep are very important.

We are so happy to have him home, but we are still battling this illness. Please continue your prayers, as they are still needed. Thank you for checking in on our Angel.


Tuesday, November 21, 2006


Nate was discharged from the PICU this morning and arrived HOME at 12:35PM.

More details later....

Monday, November 20, 2006

Nightly Update 11-20-06

Nate had a pretty good day on Monday. He was fussy and struggling a little bit this morning but once we got everything done, he did better. He was awake a good bit overnight, so he took a late morning nap that turned into an early afternoon nap as well. He was in a good mood this evening and even watched a little Monday Night Football as I got him ready for bed. Once I got him turned and started Veggie Tales on his DVD player, he was in a zone. So much so that I had to pause the DVD to get him to look at me as I was telling him "Good Night"!
The chest x-ray and the airflow throughout both sides of his lungs were better today so Dr. Carey was pleased with his progress. We'll continue to monitor his progress and a round of blood work is scheduled for Tuesday morning.
Thanks for checking on the little guy and we'll keep you updated...

Saturday, November 18, 2006

Nightly Update 11-18-06

For this weekend, Jen & I are trying a slightly different schedule. Both of us get to the PICU early in the morning to get him up and going. The mornings seem to be the critical times so it is important that both of us be there to get him started in the right direction.

Once he is awake and we have finished the VEST and the Cough Machine one of us will leave to go home to do some of the things that have been pushed to the back burner for the last 2 weeks…really fun stuff like laundry, opening the mail and paying the bills! We are also trying to rest and relax a little since both of us are pretty burned out at this point. Today was Jen’s day to leave and Sunday will be mine.

Nate was in a pretty good mood for most of the day. His chest x-ray was slightly better than Friday’s x-ray so that is good news. The bad news is that his nose is extremely congested / stuffy / blocked with scabs of dried blood. Yesterday he sounds so stuffy and when Dr. Carey looked up his nose this morning, we understood why. We are doing saline breathing treatments every 2 hours in addition to his regular treatments in hope that they will moisten and loosen the blockage. We’ll talk to Dr. Carey tomorrow about a plan on how to treat this situation plus prevent this from happening again.

David Rieck stopped by to see Nate and bring us some snacks from Wild Oats Market. He got to see Nate as we did the Cough Machine and as he got ready to take his nap. We planned to do a little male bonding during the Ohio State vs. Michigan game but Nate fell asleep about 15 minutes before kickoff. It turned into a good nap of about 3 hours but he was really cranky when he woke up! We did the VEST and Cough Machine to help clear his lungs and he was much happier after he got to watch SpongeBob. I came home about 6:15PM and Jen stayed to get him squared away for the night.

Thanks for your prayers and Get Well Soon wishes!!

Friday, November 17, 2006

Nightly Update 11-17-06

Nate had a decent nap with only a few desatting episodes. He slept until 5:00PM then got to enjoy one of his favorite shows, SpongeBob. We were able to do the VEST for 18 minutes and it really helped bring up some stuff…nothing really bad like before just clear or white secretions. Jenny Streetman, one of his night nurses, stopped by for a quick visit since she was working down at St. John this afternoon / evening. He was very glad to see her and all three of us look forward to getting him home soon so we can resume our normal schedule!

One good thing was that he spent about 10 minutes off his BiPAP when I changed out his masks. He is VERY congested but was able to hold his own. It was great to see him off the BiPAP and he enjoyed moving his head around a little bit. I am sure that he also enjoyed getting his face washed!

Once I got him re-positioned on his side and started Veggie Tales for him, he was good to go. In fact, I had to pause the DVD to get him to look at me when I told him “Good Night”.

Another chest x-ray will be taken in the morning so let’s hope and pray that there is some improvement in it!

Good night…

Mid-day update 11-17-06

I'm home for lunch to let the dogs out, so I thought I'd give a mid-day report. Last night was good news, this morning - not so good news. Another example of our rollercoaster life and Nate's ups and downs. We arrived at the hospital to find him fussy, exhausted and on a lot of oxygen. He apparently didn't have a good night. He cried a lot, kept desatting in which they had to put him on O2 (which really doesn't help him, it helps his oxygen saturations, but doesn't "fix" whatever the problem is that is making him desat), and he was in obvious discomfort due to the break in his leg. Trey and I changed masks and tried to get him comfortable and clean him up, when his nose started bleeding, like a real nose bleed, not from us suctioning it out. We still don't have any answer as to why that happened. They did a chest x-ray which didn't look so good and his white blood cell count is high again. Dr. Carey said he might do this for awhile, have a good day, then a bad day, until he's totally over his infection and his lungs can totally clear. He said he wants Nate to have three full days of no desatting, no problems, blood gases looking good and x-ray looking good before we can take him home. We thought yesterday was the first day, but not so, since today hasn't been so great. Poor little guy, he just can't catch a break - my heart aches for him! We will continue all of his treatments and just take it a day at a time. Nate is such a fighter and he WILL recover and be coming home soon! I just know it!

We thank God that he chose us to be Nate's parents. We are so lucky to get to raise such a strong and special little boy. He has such an amazing spirit and soul. He is truly an Angel on Earth. We are so blessed.

Thanks again for your prayers and support, Jennifer

Thursday, November 16, 2006

Nightly Update 11-16-06

Sorry that we did not have a post last night... it was a very long, exhausting day so I just decided to skip it and go to bed. So here is a summary of what has been happening for the last couple of days:

TUESDAY AFTERNOON/ EVENING – As mentioned in the previous post, we classified Tuesday as a “good” day. Pop and Grandma Annie drove up from Dallas for a quick visit and spent a few hours with the little guy.

WEDNESDAY – When Jen arrived at the PICU, Nate was struggling. She worked to get him squared away and he finally calmed down after his breathing treatment, VEST and Cough Machine. Dad & Annie stopped by for a little while before heading back to Dallas. The PICU had several groups of student nurses and many of them asked a lot of questions about Nate, SMA and his level of care.

The afternoon was pretty crazy and stressful with all the nurses -- Nate really just wanted to rest and not be the focus of all the attention. He did not take a long nap so he was fussy and uncomfortable due to the pain in his left leg.

THURSDAY – The morning started off better that Wednesday’s did! One of Nate’s favorite nurses, Jessica, took care of him overnight and he slept well until 5:00AM. Dr. Carey ordered a CT scan of his sinuses and this was scheduled for 10:00AM but was delayed until 11:30AM. It was a very quick procedure and, even though he had been given a sedative, he was awake for the entire time. He finally fell asleep only after we got back to the room and got him turned on his side. He then proceeded to sleep for the next 5 hours and 20 minutes!

The results of the CT scan were good – he has a minor sinus infection, not a major one. We think that he has been battling a major sinus infection over the last couple of months and unfortunately, it got to the point of ending up in the hospital. As most of you know, he can't blow his nose or cough, so all that mucus was staying up in his nose and getting thicker and thicker. We would suction big globs/clots out periodically, but the remainder would stay up there and more would accumulate and the infection became more severe. If we had done the CT scan when we were first admitted, we are convinced it would've showed a lot of blockage and swelling. We believe the IV antibiotics, saline breathing treatments, and the healing essential oils have really helped improve the condition of his sinuses. A major antibiotic protocol will not be needed but Dr. Carey will keep him on some antibiotics to keep everything in check. At least we now believe we have some answers, we can get him totally recovered and when we come home, we'll have a preventative plan so this doesn't happen again!

We also tested Nate for allergies and there are only 2 areas of concern. The reactions were in the Mild to Moderate range so nothing major, just things to watch. We’ll talk more with Dr. Carey about how to handle this issue going forward.

Nate’s chest x-ray looked better today – more air in the lungs and less “haziness” in certain areas. All of us were very pleased to see this improvement and we can hear improved airflow in both lungs.

Nate’s x-ray on his left leg did not look so good – he has another fracture in the upper portion of the left femur. It is very similar to the first fracture in his upper right femur but not as severe. Dr. Holderness reviewed the x-rays this morning but we did not hear back from him on how to treat this fracture. He will be in the office on Friday afternoon and we’ll get a game plan together at that time.

Overall, Nate is slowly but surely headed in the right direction. We thank you for your prayers, your support, your messages, your phone calls and your visits. Nate is definitely tired of seeing Mommy & Daddy so much…every time that both of us stand by the bed, I think he looks at us and wonders, “OK, what are you going to do to me now???”

Our goal is to bring Nate home by Thanksgiving so keep those prayers coming. Dr. Carey said his discharge will hinge on improved chest x-rays and another one will be taken on Saturday.

Thanks for checking on the little guy…Good night!

Tuesday, November 14, 2006

Nightly Update 11-14-06

Nate had a better day today...the usual Nathan temperament, sounds and expressions were more evident today. After a very rough 8 days, the last 2 days have been the best. He is still having pain in the left ankle area but the good news is that the x-rays did NOT show a fracture in that area. We hope to have a more definitive answer from Dr. Holderness in a couple of days. Until then, we'll continue to be extra careful while moving & re-positioning him.

We’ll post a more complete update on 11/15/06 but we just wanted to let everyone know that the Little Man had a good day.

Thanks for checking on him…Good Night…

Monday, November 13, 2006

Nightly Update 11-13-06

This will be a brief update since both of us are pretty tired!

After a very difficult & rough weekend, Nate had a pretty good day today. His white blood cell count is down to 14 after skyrocketing to 23.3 yesterday and his blood gases are better. This morning about 6:30AM the nurses and the RT (Respiratory Therapist) suction a major, thick, bloody plug from his nose. It was very similar to the one that we suctioned from the back of his throat on Sunday and having it out of there really helped him. His breathing was better, the airflow in his lungs was better and he was in better spirits. All of the thoughts, prayers, breathing treatments, antibiotics and healing oils are beginning to work!

Nate still has a tough battle ahead of him but he is one of the strongest individuals that I have ever been around. As Jen said in a previous post, it is amazing that a 3 year old is teaching all of us so much about Life!

We’ll update again tomorrow and thanks for checking up on the little guy…

Sunday, November 12, 2006

Nightly Update 11-12-06

It was another long, hard day for the little guy…

The morning always seem to be the hardest for him and today was no exception. His breathing was labored, his heart rate was up and he needed O2 almost all morning. We could tell that he was uncomfortable & in some pain but we could not figure out what was bothering him. We finally found out what was wrong shortly after 12 Noon…

As we mentioned previously, we have stopped suctioning Nate’s nose in order to let it heal and the cold saline breathing treatments seem to help him. This afternoon right after his 12:30 VEST session, we started to cough him. Before we did the first set of coughs, Jen decided to suction the back of his throat with a catheter and hit a stringy glob of mucus / secretions / dried blood so thick that it clogged the catheter. She quickly grabbed a Little Sucker, a plastic device that can suction more stuff than a catheter, and used it to pull out this mess. I am not exaggerating when I say it took between 10 to 15 seconds for all of this stuff to come out of his throat and mouth. Once we got this out, Nate was visibly relieved; his heart rate dropped to a more normal level and his breathing was not as labored. When I talked to Dr. Carey about it, he thinks it was most probably some dried nasal mucus that has been soften and loosened by the saline breathing treatments and was sliding down his throat. It was probably one of the most disgusting things we have ever suctioned out of him and I cannot imagine the damage / repercussions that would occurred if this had made its’ way down into his lungs.

The chest x-ray from today looked better than yesterday’s. The left lung is showing more airflow but it is still very diminished. The right lung still looks a little hazy but his breath sounds on that side are still good.

Unfortunately, Nate might have another small fracture in his left femur again. His leg was very tender all day long and he grimaced and cried at the slightest movement of it. We will have his Orthopaedic Surgeon, Dr. Holderness, look at the film tomorrow and let us know what he thinks.

We also think that Nate might have an infection as a result of the PIC Line. As Jen explained in a previous post, one of the biggest risks with the PIC Line is the risk of a blood infection. Nate’s left arm and the upper part of his chest / shoulder were swollen today and slightly warm to the touch. The IV nurse came to take a look at it and was concerned. Dr. Carey ordered a blood test and his white blood cell count had more than doubled in the last 24 hours, obviously indicating infection. He was not running a fever but he had gotten some Advil & Tylenol so the fever could have been masked. Our biggest concern is that this could be a staph infection and this type of infection is extremely difficult to eradicate. Dr. Carey started him on a 3rd antibiotic and a culture has been sent to the lab to see what grows out in the next 24 to 48 hours.

Nate had a few visitors today – Nana flew up from Dallas this morning for a quick visit; Uncle Jeff stopped by when he got home from Kansas City and Denise stopped by again to check on the little guy.

Since, he only got about a 45 minute nap this afternoon so he was totally exhausted when Jen left the PICU tonight. They gave him some Tylenol to help with the discomfort and will try to be extra careful when repositioning him tonight. The main thing will be to just adjust him to change the pressure points and not turn / move him too much.

Saturday, November 11, 2006

An exhausting day...

Nate had tons of gunk in his throat and chest this morning when Jen arrived at the PICU. He really struggled until we did his breathing treatment, got the VEST on him and then did the Cough Machine. The first set of coughs brought up a huge plug / gob of nasty stuff. It is scary and quite gross to see what comes up out of his lungs when doing the Cough Machine but it is for the best. If that stuff was to stay in his lungs, it would only cause more problems. The VEST and the Cough Machine really wear him out but it really does help him so much. We get a lot of stuff up with each set of coughs and stuff continues to drain out even after coughing him while he is lying on his side.

Our routine has been to cough him after every breathing treatment and to also do saline breathing treatments to help keep his nasal passages as moist as possible. Every time we cough him, we have one of the PICU nurses ready to bag him in case his airway gets blocked again. Sheila did have to bag him briefly after the 4:00PM cough session because a big, thick plug was in the back of his throat and he choked on it. Jen was able to suction it out and his color returned quickly.

The best part of his day was the bath that he got! Jen and I gave him a full body bath / rubdown and he really enjoyed it. It took us about an hour to do everything but it was well worth it to see the smiles on his face as we did it. He smells good and looks good for any of the cute nurses that might happen to walk by…

He had a number of visitors today…Jenny, his night nurse, was working at St. John last night so she stopped by this morning when her shift was over. Denise, another of his night nurses, was working at St. John today, also stopped by for a quick visit. Jill and Hall came up for a visit as did Grandpa Jody and Judy, who drove into Tulsa to see the little guy. Miss Sue stopped by one her way to lunch then came back to spend some time with him this evening so Mom & Dad to come home at a decent hour. I really think he was glad to see us leave because that meant no one was going to cough him anymore!

Dr. Carey said that while this morning’s chest x-ray looked bad, it did look better than yesterday’s x-ray. We all feel that he is headed in the right direction but it will be a long, slow march.

As always, we thank you for your prayers & support!

Friday, November 10, 2006

Evening Update

After a VERY ROUGH day, we thought that we'd post a few pictures of Nate from this afternoon. It continues to amaze us that he can smile and be so happy even after the day he has had.

Nate & Miss Sue enjoy his Slings:

Nate checks out Junior from Veggie Tales (Thank you to the Nelsons!)

A good picture even with his BiPAP on...

X-ray update...a long, hard road ahead

Dr. Carey made his morning rounds after Nate returned from the PIC Line procedure and the story with his lungs is not good. His lower left and upper right lobes are completely white, which means they are filled with secretions / plugs / atelectis. He most probably has some infection which is causing increased secretions and the secretions are overwhelming his lungs.
The first goal is to identify and treat the infection which would reduce the secretions. He is on 2 strong antibiodics plus he has resumed the Tobramycin breathing treatments. He is also on steroids to reduce inflamation of the lungs. Next, we have to keep the secretions flowing out of him as much as possible. He is getting breathing treatments every 4 hours followed by CPT followed by the Cough Machine. His nasal passages are full of scabs and gunk so we have started using a humidifier with his BiPAP to help moisten the irritated areas.
Intubation is a possibility but will be used only if none of the other options work.
Overall, this will be a very tough battle for the little guy and we expect an extended hospital stay.

PIC Line...Take 2

The procedure to adjust the PIC Line this morning went well and it is now in the right spot. It took longer to get him ready, transport him downstairs, move him from the hospital bed to the table and get him re-positioned than it did for the doctor to adjust the position of the catheter. He's back in his room in the PICU and should stay sedated/asleep for a couple of hours.

Thursday, November 09, 2006

Thursday, November 9

Today started out OK. Nate was awake and seemed to be doing fine. However, the nurse said he didn't sleep well last night, seemed uncomfortable and fussed a lot. We got a lot of "gunk" out of his lungs and nose when coughing him. Soon he calmed down, watched TV and did his slings (and he kicked and moved really well to his favorite music!). So things were looking good.

I met with Dr. Carey and he suggested putting in a "PIC" line instead of the IV that's in his foot. He said Nate is going to be here a while longer and the IV should only be in for about 3-5 days and it was already getting red and irritated. The "PIC" line is an IV cathedar that is threaded through a vein into his chest and can be in for a long period of time. They can draw blood from it and do meds through it. It seemed to make sense to me. The nurse informed me he would have to be sedated for the procedure. We had to sign a Consent Form. I hate Consent Forms. To me, they mean "CAUTION: SOMETHING TERRIBLE COULD HAPPEN DURING THIS PROCEDURE!". But we knew it had to be done. The nurse said it's really no big deal, the only thing that could go wrong is it would not be threaded correctly and go into his neck instead of his chest (which is not good). OF COURSE, this is what happened!!! They did a chest x-ray and it showed it was not threaded correctly. So, tomorrow, another procedure. He has to be taken down to another unit, sedated, and they will ultrasound the cathedar and put dye in him to trace it. Of course, I also think he could develop a blood infection from this........but we PRAY that doesn't happen! So another Consent Form.......

Also, the chest x-ray showed his lungs look worse than they did yesterday - BOTH OF THEM! They are both getting air flow, but both sides looked whiter than yesterday's x-ray. His nose is totally scabbed and swollen. We think this is due partially to the fact that he has been on a lot of oxygen and on the bi-pap 24/7 and it's drying out his nose. We've had a lot of problems with his nose in the last six months, but it seems to be worse now. We are going to bring our bi-pap from home with the humidifier to see if it helps any. We think some of the problems we've been having with his nose over the past six months, as far as scabs, huge mucus plugs and swelling, might be due to serious sinus problems or allergies. Before he is discharged from the hospital, he will have a CAT scan of the sinuses and an allergy test. Hopefully, we will get some answers.

Other than all of the above, Nate has remained in good spirits and is handling all of this like a champ. He's had two major traumatic experiences in the last four days in which he almost died; he has bruises all over his body because they've stuck him so many times; his nose is practically swollen shut and bloody; he has to be coughed and have his sore nose suctioned out; among many other unpleasant things; and he just takes it as it comes, puts up with all of it, and when it's over, he's smiling and looking at me with his soulful, loving eyes. I will NEVER be as strong as he is. Here I am, 36 years old, and my 3 year old is teaching ME what life is really all about. His strength, toughness, determination, and happiness continue to amaze me. Whenever I get down and think times are tough, I look at him and think........GOD IS GOOD AND LIFE IS GOOD!!!!
Again, thanks for your continued support and prayers. We don't know what we'd do without all of you. Nate especially thanks you................

Wednesday, November 08, 2006

A better day...

This update will be short since we're going to try to get some decent rest tonight!
Nate had a good last night. He slept soundly until 4:00AM when they had to do some lab work on him. He finally fell back asleep by 6:00AM and slept until almost 11:00AM!
This morning's chest x-ray showed some slight improvements. It appears that the mucus plug is gone and that the lung is beginning to slowly re-inflate since it was not as "white" as it was on Sunday. He still has diminished airflow in & out of the lung but we are extremely glad to see any improvement in his x-ray. The right lung has some "haziness" to it so we'll keep an eye on that side and hope that it does not turn into a problem.
He was in a pretty good mood most of the day...a little cranky around 6:00PM when he just wanted to be left alone. Jennifer, Hal and I stood at the door talking and just kinda "ignored" him for a little while. He quit fussing and was quite happy just watching us and the nurses at the Nurses' Station for a while.
No major episodes so all in all it was a better day....

Tuesday, November 07, 2006

A rollercoaster day...

When Jen arrived at the PICU early this morning, Nate was having a difficult time. He was fussy, irritated and had lots of junk in his throat and lungs. She repositioned him and the Respiratory Therapist (RT) started his breathing treatment. Once we got him coughed and suctioned out his nasal passages, he seemed to be in better mood and the rest of the morning went pretty well.

Dr. Carey made his morning rounds and we got to review Nate’s chest x-ray with him. The left lung shows a slight improvement but there is some “haziness” in the right lung. He still has diminished airflow on the left side but the slight improvement was something to be happy about. We’ll do another x-ray in a day or so.

He took another late-morning nap which was interrupted but us having to use the Cough Assist Machine on him. We have been “coughing” him after every breathing treatment in order to help get out some of the gunk that is down in his lungs. Earlier in the day, we had talked to Sharon, the PICU nurse, and Jo Anne, the RT, about all of the mucus and junk that we suction out of Nate’s nasal passages and how much this concerns us. Jo Anne offered to show us a way to “flush out” his nasal passages rather than suction them out.

As she was showing us this technique, Nate started to struggle and Jen could immediately tell that some of the saline solution and some of the junk from his nasal passages had gone down his throat. Before we could suction out his mouth and throat, he aspirated (inhaled) some of the stuff and proceeded to get choked. His O2 saturation plummeted and the PICU nurses came running since his airway was blocked again. He started turning blue and his O2 saturation level had dropped to the 20s in a matter of seconds so they proceeded to bag him and suction his throat until he got back into the 90s. The RT and I quickly put on the BiPAP but O2 level proceeded to drop so once again they started bagging him. They were finally able to clear his airway so we put the BiPAP on and he was able to maintain the needed O2 level.

Needless to say, it was another scary incident. Just when we think that things are beginning to improve slightly, he has another setback. I will say that it was amazing to watch them work on Nate and that Jen & I learned an important lesson on how to bag him more effectively.

Thanks for checking up on the Little Man and please keep those prayers coming!

Monday, November 06, 2006

PICU Update 11-6-06

Nate had an OK day today. He took a mid-morning nap but is still WAY behind on his sleep. It is still very hard to hear any airflow in his left lung and we continue the breathing treatments and CPT to help break up the plug. Tomorrow they will take another chest x-ray and we’ll have a better idea of how the left lung looks. He seems to be coughing more than normal so hopefully that is a sign that he is getting some of the secretions up and out.

He was very tired and cranky when we left the PICU this evening. He had labored breathing and his heart rate was higher than normal. We hope that it is just due to the fact that he was extremely tired and not something more serious. He had been fighting going to sleep for over an hour and could hardly stay awake during Veggie Tales.

Once again, we THANK YOU for your prayers, your support, your phone calls, your e-mails, your messages and your visits to the PICU. Nate, Jen and I are very lucky to have such a great support system and we hope all of you realize how much we appreciate it!

Sunday, November 05, 2006

Extra prayers are needed for Nate...

Some additional prayers are needed because Nate is currently in the PICU at St. John Hospital after a major crash this afternoon.

To make a very long story much shorter…About 12 Noon, he started having difficulties while Jen & Linda were coughing him and suctioning out his nose. He started to choke, his O2 saturation level dropped into the 60s and he started turning blue pretty quickly. We went through our standard procedures of bagging, coughing, suctioning, breathing treatment, using The VEST to help break up the secretions and getting him on the BiPAP several times.

Finally about 1:00PM, he seemed to stabilize so we started another breathing treatment and turn him on his side to let the secretions drain out. About 10 minutes later, all hell broke loose…Jen could tell that he started to choke so we started to suction but his O2 saturation level plummeted. We took off the BiPAP and started to bag him while Linda called 911. Even though we continued to bag him, his O2 level kept dropping and ultimately registered 0 for between 2 to 3 minutes. His heart rate stayed between 40 to 60 beats per minute but nothing we did could get his saturation level above 0 and we really thought that we were going to lose him. Finally, just before the Bixby Fire Dept. arrived, we were able to suction a big glob of mucus from his throat and his saturation level started to rise slowly. By the time EMSA arrived, his O2 saturation level was in the mid-80s and his heart rate was rising as well.

We transported him to the ER at St. John while the Paramedic and I bagged him the entire way. After getting an x-ray and talking to Dr. Carey, we moved him to the PICU. His left lung still has a mucus plug in it and is pretty much collapsed since there is minimal air in it. As we left the PICU tonight, the nurse was able to hear some very faint breath sounds on the left side. He will continue to get breathing treatments through out the night and CPT to try to dissolve the plug. He will be in the PICU until the plug is gone and his left lung re-inflates. He is also on antibiotics to fight of any infections that he might have plus some steroids for his lungs.

Once again, Nate continues to amaze us. We really thought that he was not going to make it since his O2 saturation level stayed at 0 and we could not get it to come up no matter what we did. Luckily, he is one tough little boy and has so much “fight” in him.

We thank you for your prayers and support and ask that you say a few extra ones for him over the next couple of days. We’ll keep you posted…

Saturday, November 04, 2006

Fracture Update...GOOD NEWS

We finally received a call from Nate's Orthopaedic Surgeon (only after calling their office to remind them that the x-ray was taken 10 days ago and we still hadn't received a report!).
Dr. Holderness said that Nate's fracture is healing nicely and that it looks much better than it did several weeks ago! He said that we should continue to avoid the stander but that we can do anything that Nate tolerates. He'll order another portable x-ray in about 3 weeks to make sure everything looks good before giving us the OK to resume normal activities.
We hope that everyone has a great weekend and thanks for checking up on Nate!

Thursday, November 02, 2006

Picture of "Mr. Cool" Driving His Power Chair Today

He loves to go either backwards or in circles over and over (it makes me dizzy watching him!). So, we're still practicing!!!!

Wednesday, November 01, 2006

Pictures from Halloween and Nate Sleeping During School

Halloween 2006

Happy Halloween everyone (one day late!). We had a great time! Nate passed out candy to all the kids, and we had a LOT of kids! He loved seeing all of them in their costumes, especially the little girls! Dr. Nate was a hit - he was the only one dressed up as a doctor. Trey took him to two of our neighbors houses to trick or treat. It was the first time he had actually been "trick or treating" instead of passing out candy. I almost cried! Of course, he can't eat any candy, but it's the fun of it and he loved it. But his favorite part is seeing all the kids and getting attention!

Nate's sleeping habits are still all messed up. Monday, he had school at the house, and within 5 minutes of the teacher reading a story, he fell asleep...sitting up! So, they left and today he was supposed to have school again. But, he only slept like six hours last night and didn't take a nap today, so I canceled school again because I knew he would either be cranky and cry the whole time or fall asleep on them again! Hopefully, he'll get back on track by sleeping at night and taking naps!!!!

Saturday, October 28, 2006

Picture of Mom and Nate on the Patio

October 28, 2006

This week has been an uneventful one, meaning no major crises and nothing really exciting happened. Monday, we went to Story Time at the library and Nate fell asleep within two minutes. I hope the librarian doesn't take it personally b/c he's fallen asleep the last two times we've been! His sleeping habits are still all messed up...he stays up half the night, doesn't take a nap, or naps in the evening. Anyway, we decided to leave the library and went out to the van and the automatic ramp was broken. So Sue and I tried everything (we even tried to lift Nate & his chair into the van - like we're superhuman and can lift all that weight safely!!!). Finally, I called Trey and then he helped me figure out how to manually get the ramp to work. Nate slept through the whole thing! Thankfully, it was a beautiful day outside and we made it home! We've had to use the ramp's manual crank for the last couple of days until we can get the van into the Service Dept. next Tuesday.

Tuesday, the mobile x-ray company came out to do another x-ray on Nate's femur. We haven't heard the results yet but we're hopeful that the femur is healing quickly. He still acts as if it is a little tender if you move his leg a certain way, but we have pretty much done our normal activities except the stander and the ceiling lift.

Today, we "attemped" to go to Brady's 4th birthday party. Nate seemed to be doing fine and just after we loaded him in the Kid Kart to get ready to go, he started struggling. Too many secretions?, a plug?, congestion? ...we just weren't sure. We thought that once we got into the van, he would calm down and do better since he LOVES to go for rides. Unfortunately, the whole way to the Nelson's house, he struggled. Even with his bi-pap on and with oxygen, he had very labored breathing and his heart rate was very high. Ultimately, I took Brady's present into the party and we just came home. He calmed down after a we got him in bed and he was given a breathing treatment. We were very sorry that Nate had to miss the party....The Jenks Fire Dept. was coming for a visit plus there were lots of kids and it looked like it was going to be a lot of fun. But, such is life and we know we made the right decision to take him home -- He took a four hour nap this afternoon!

That's it for now.......

Saturday, October 21, 2006

Kyle's Birthday Party

Today, Nate went to a friend's Birthday Party which was also a Halloween Costume Party. Like Nate, Kyle Gundy has SMA Type I and this afternoon we celebrated his 2nd Birthday.

Here are a couple of pictures of Dr. Nate, SMA Specialist...

Nate and Mommy taking a few whacks at the pinata... (It's kinda hard to tell who is having more fun here!!!)

Nate & Kyle in the Halloween costumes...

Friday, October 20, 2006

Pictures of the Kids Painting Pumpkins

Friends Over for Playtime

Yesterday we had the Gundys and the Nelsons over. Jana has two children (Tyler, 3 years old, SMA free and Kyle, almost 2 years old, SMA Type I) and Shelley has three children (Hayley, 6 years old, SMA free, Brady, almost 4 years old, SMA Type III, and Colby, 8 months old, SMA Type III). They painted Halloween stuff, watched movies and played. It was a lot of fun! Tomorrow we will be going to Kyle's 2nd birthday party, which is a Halloween party also, and Nate is going to be a doctor. I will attach some pics from the party on Sunday.
It's such a blessing to have met these families, as we have something in common. Unfortunately, it is SMA. But, it means so much to have friends that understand and can relate to the life we lead and the challenges we face.

Tuesday, October 17, 2006

Missing pictures

Nate & Mommy...

Nate relaxing in his TumbleForms...

Still Doing Better...

Well, we found out Nate has a fracture. It is referred to as a "buckle" fracture. He seems to be healing very well and is tolerating moving his leg, being picked up, getting in his chair, etc. The Dr. said to just keep doing what we're doing, but be careful and go by how he is feeling.
The Prednisone seemed to do the trick on his wheezing and his lungs have been clear and he has spent more time off his bi-pap the last couple of days, which is great!
Nate is really enjoying school. His teacher is wonderful and so are his therapists. We are looking into going to the school gym once a week so he can practice driving his power chair. His physical therapist and occupational therapist were impressed on how well he could drive and said all he needs is practice, practice, practice! He can't really drive it in the house yet (I'm trying to save our walls!) plus with the weather getting cooler, the gym will be great!
Nate has been going to Preschool Story Time at our local library every Monday. He loves it! There is a different theme every week and he enjoys seeing all the kids. The first time we went, I had a hard time b/c all the kids were staring at him and some seemed to be scared of him. It took all I had not to just yell out "He's a normal boy, has normal feelings...he just can't move or breathe like you do!". But I realized he does look different and that is going to happen. It just takes time for kids to get used to him and I explained to them his situation and then the kids were fine and now they talk to him, open the doors for him, and at the end of story time, they all say "Bye Nathan". It's too cute!
I've attached some recent pictures - one of Trey and Nate watching baseball together, doing some male bonding; one of Nate and me spending quality "close" time together (it won't be long until I can't hold him anymore - he's huge!); and, one of Nate in his chair.
So, things are going well and we're staying busy. Nate is so happy and loving life!

Thursday, October 12, 2006

Doing Better Today

We finally heard from Dr. Holderness and it's good news. He said no "acute" fracture could be detected. We are still not sure what is wrong - could be a stress fracture, hairline fracture, a nerve, muscle, but...he's doing much better today. He had a great bath and didn't seem to be in much pain when I picked him up. Dr. Holderness has ordered another x-ray for next Monday. He said to just take it easy and go by how he's feeling as to moving him, sitting him up, etc. We will try and get him in his power chair today. His physical therapist and occupational therapist will be here at 4:00. Also, his lungs sounded clear today and he's breathing much better. More good news! Nothing is worse than seeing your child in pain or not being able to BREATHE!!! Something we all take for granted.... He seems to be comfortable and feeling well and he's very happy today, which makes MOM extremely happy!!! I've attached some pics from today's bath and also of him tasting my birthday cake over the weekend. Naturally, he loves sugar! And he LOVES his baths. He moves so much in the water and I hate when he has to miss a bath or has a short one because of pain or respiratory issues. But, not today - today he had a great bath and made his cute sounds and kicked and wiggled for about 45 minutes!!!

Today is a good day................