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.