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!

Jennifer

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

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.

Jennifer

NATHAN IS BACK HOME!!!!

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

More details later....

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...

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!!

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

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!

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…

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…

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.

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!