Afternoon Video Update

A Little Better Day

He seems to be better today than yesterday, but by no means "better". They have turned down his ogegyen assit a bit and he has done well with that. He is more active and seems to have a bit more energy. I hope this means he getting past the worst part.

Fred passed his stress test he took today. He needed to pass it if he is going to have his shoulder surgery next week.

Not much other news. Just more of the same.

Milestone

Blake is waving! Due to technical difficulties the video will be posted later. Today is pretty much the same. Blake's numbers are a little high. They turned the ventilator down and his heart rate increased, so they are still working on finding a balance. They came in and did his respiratory therapy and afterward he was tuckered out. Becky said he is still clutching onto his brown fuzzy blanket. Becky and Fred are now in pursuit of another fuzzy blanket so that they can wash his other one.

Over Achiever

Blake is a real over achiever. He has been diagnosed with BOTH types of RSV. I do not know a lot about this, but it sounds like only a VERY small percentage of kids can say that they have had BOTH, and one of them twice...

The ventilator that they have him on is just to assist in his breathing. They have no idea what day he is on with the RSV's. Hopefully he is closer to day six than four.

It sounds like it has been a little bit of a homecoming party at the hospital. They were greeted by some other families that they have befriended over the last month. Some of them having good news about their children's health. Jeb, one of Blake's doctors from the last time he was in, gave Becky a big hug and kissed Blake on the head when he saw them. I am glad that they have a support group there in the hospital. People that were total strangers a month ago.

It is late and I am not writing very well. I guess that means it is bed time.

PICU

Blake has been moved to the PICU (Pediatric Intensive Care Unit) and is breathing better now that he is hooked up to everything. They have him on a ventilator which makes he breathing less laboring. He will be in the hospital for at least 10-13 more days to get over the worst part of the RSV. Please continue to pray for our little Blake and his family.

No Sleep

I guess it was kind of a bad night. Becky and Dad got to the room around midnight, and then Becky got a call a little before two saying that Blake was getting worse. She has been up with him since. She said that his breathing is as bad as it has ever been and that his numbers are not that great. They had a real hard time getting blood from him last night but the IV went right in. Knowing that things are going to be worse as the RSV sets in, they were talking about putting him into the PICU this morning. Becky is just pacing around waiting for them to do it already. Becky seems to be handling it very well and said that Dad has been very helpful. I guess it is kind of old hat for her now. They have spent enough time in there that she should be working on her medical internship. I just got a call from Mom and she said that they will be putting Blake in the PICU. I think that is a good thing. Not good that he has to be in there, but good that they are doing it now. I will have Katie keep this everyone posted with updates while I am in meetings today.

RSV Take 2...

Not all of the test have come back yet, but they have diagnosed Blake with RSV, AGAIN. They think that he must have gotten it before he left last week. They say that days 4,5, and 6 are the worst, but they really don't know what day he is in. It sounds like everyone is exhausted. I am in meetings all day tomorrow, but I will try to have Katie keep the blog updated.

Blake 6 p.m. Update

I just talked to Dad. It sounds like everything went as well as it could on the drive in. They got checked into the room and up to the hospital. He is in and on their Oxygen and suction, but he may not be able to see a Dr. for three hours. I will have an update sometime by the end of the night.

Just to clear up a few things from the previous post, I may not have explained everything well to Katie. Becky had taken Blake in because his breathing was real raspy and he was quite con jested. They did an ex ray on his lungs and could see that one was filled up. Because of his condition the hospital in Ely didn't think it was best for them to deal with and that he would be better cared for in SLC.

Update on Blake

This is a very rough update because it is third-hand information. Becky told Maurine, Maurine told Jared, and Jared told me. So what I know is this: Today when Blake went for a checkup in Ely, the doctor said that he didn't have the ability to take care of Blake's pneumonia virus there. There is no need to get TOO concerned right now because they can take care of Blake in Salt Lake. Becky, Blake, and Fred have headed to Salt Lake so that Blake can have access to adequate care in SLC once again. Maurine, Chad, and Aleah will be staying in Ely. Note that they are driving and NOT taking the life flight there, so that is a good sign! I believe that access to a certified respiratory therapist who specifically works with babies will be beneficial. That is the update. Jared is on business right now, and this prevents him from talking on his cell phone. He or I will update once we have more details.

Blake Is HOME!!!

I haven't had computer access all weekend to post anything. I guess that there are still a lot of people looking for updates on Blake, so I am sorry to you for my slothfulness. They made it home Friday afternoon with no issues. It sounds like they had LOTS of equipment waiting for them at the house. I am sure that took a little situating to get everything in place. They should be getting more stuff this week to replace some of the things they have. Chad seemed to think that they will get all the kinks worked out soon and have the best stuff there for their situation.

It sounds like Blake has been doing well. Becky told me that he was needing some extra suction and has had some junk in him. I think that it might be from the viruses that he has been fighting. He sure looked good in the video they sent yesterday. I don't know if they will want me to keep posting or if they will start putting things on their own blog now that they are home??? I will let you know what they decide.

Space Age Microwave

It seems like I have been doing a lot of stuff at the house, but there really isn't any noticeable changes to measure my accomplishments. Friday I took off work a little early because I really wanted to get the microwave hung. I haven't been able to do it at night because I didn't want to set up lights while I had the power off for wiring the outlet. Even though it says that you should not install by yourself, I went ahead and did it anyway. No one was available ( i called on person) to help so I just went for it. The only problem I had was that the screw holes on the template did not match up right so that took a little creativity, but I got it secured and it looks great. It was a give from my buddy Jason. It was an extra he had sitting in one of his homes so he gave it to us. It is pretty cool. When you turn on the vent it opens up on top. I will post a video of it. I had never seen one do that. I am sure it will break in a few months and I will have to prop it open, but it is pretty neat for now.

Birthday Surprises

Sorry for my weekend sabbatical. I have a lot to catch up on and not a lot of time to do it. I guess I can go back to Wednesday. Katie and I were supposed to be painting and cleaning the Townhouse that night. I drove all the way up there and got a call from her sister Mindy saying she needed someone to watch her kids while she did some cleaning... When I called Katie to tell her she was all about going straight down there. It seemed a little bit odd, and irritated me a bit because we have so much to do, but I dismissed it without much thought.

Thursday night I found out what she had been doing. It was all part of her plan, which worked, to have a surprise party for my 30th birthday. We went to my aunt and uncle's house for what I thought was dinner with them, but it turned out to be friends and family there to surprise me. Katie's folks even drove all the way up from Malad! It was a good time that left me feeling pretty bad since I had been kind of ticked about the whole babysitting thing the night before.

We have not gotten much done on the house this week because of all the partying we have been doing. Katie's present to me was an adventure all day Saturday. We started at Home Depot to buy paint for the Townhouse, then went to the army surplus store for some ammo cans I wanted to put tools in. Next we went to Blackfoot for massages. After that we went to Pocatello and did some more shopping for the house and watched Clash of the Titans in 3D. Our next stop was Lava Hot Springs and then we ended the night with dinner at Applebee's. We were gone for about 12 hours total.

On The Road

Looks like they are on their way home.

Going Home SOON...

Well, the hope is that they will be leaving first think in the morning to head back to Ely. It sounds like everything will be set up for them to go, but I guess with how things have been you can't guarantee it until it happens. Sounds like Blake is still doing well. I guess she snapped the photo below just after he had cracked a smile. She has had to suction more today than in the previous days since Blake has been a little more junked up. Chad took Aleah swimming somewhere by the East Center for their play time today before nap time. Becky is hopping to meet up with her friends Jamie and Greg Wilson later today. It should be nice to visit with friends to break up their hospital time a little bit.

Mama

I just had a quick call from Becky. Everyone is doing well. Aleah was so excited when she got to see her brother last night.

Becky has now changed out Blake’s trach tube three times and is getting to be quite the pro. She changed his feeding tube herself today as well. She said that Blake had done really well with his voice tube. They were only going to do it for 10 minutes, but his numbers stayed up so they let him keep it in for a half hour. It will take some getting used to and let him have it in increments that increase until he is using it regularly. Becky said it was really nice to hear him try to say mama.

Chad and Aleah were able to go on a daddy daughter date to the aquarium today. It sounded like they had a good time. They are back at the room now for nap time.
I hope to get a video later of Blake while he has his voice tube in.

Wednessday Update

Becky said the Blake is doing very well today. He has a new speaking valve and he is doing great with it. He even laughed once today. I am sure that it was such a great experience for them to be able to hear his voice! I just got a text so I am hoping for a call later with more info.

The Family is Together

Laura brought Aleah over to Wendover to meet up with Chad today. Becky said that when they got back to SCL that Aleah was excited to see her and that she said that she was happy that they could be together as a family.

It is looking like they may be able to go home on Friday. I guess a respiratory therapist will be coming from Las Vegas, one from Primary Children's, and one in Ely to get everything set up for Blake.

Blake did very well today. He really didn't need any oxygen and was just breathing room air. He was a lot more happy and I think he even got to play with some bubbles. It was nice to hear that he was in good spirits. They are on their way to the hospital to try to see if Aleah can see her brother for a little bit.

Another Road Block To Ely

I just heard from Aaron that they are not able to get the equipment into Ely till Friday so that will keep Blake in SLC for the rest of the week. I guess that they are trying to get things worked out with the hospital to loan them the equipment so that they can at least take him to the room at the Ronald McDonald house. I don't have any other information right now.

Feeding Time

Not too much news from last night and nothing new this morning. Blake should be at full capacity on his new NG feeding tube. They were not able to get all of the equipment set up in Ely yesterday, but they should have everything in place today. This means that they will have to stay one more night in SLC. I am sure this is frustrating, but the other way to look at it is that last Friday they couldn't find anyone in Ely to even service them...

I think that the plan last night was for Becky to stay at the hospital with Blake. It sounds like he is progressing quite well and I hope that he was able to get a lot of rest last night with his door closed.

Financial Help

Becky's good friend Tiffany has set up an account in Blake's name. Below is the information that she left on my last post.

I have a Money Market Account with State Farm Bank set up in Blake's name, it is pending signatures from Chad/Becky. I will give them a day or two and then hunt down signatures when they get home. In the meantime, anyone who would like to contribute to the fund to help assist with the medical, travel and other expenses that the family has occurred, can send their donation to: State Farm c/o Tiffany 900 Avenue H Ely, NV 89301. Please make checks payable to: Blake Smith. Thanks again to everyone. Every little bit will help them in adjusting to their new adventure.

Monday 1200 Update

The swallow test will not go through today. They were double booked for last Friday and today because they were not sure if the one last Friday was going to happen. So that is why they thought they would have another one today.

They have taken all of his IVs out and are giving him his meds orally. They also have taken out his NJ tube (that went right into his intestines) and have put in an NG tube that will feed into his stomach. This will allow him to be released tomorrow to go back to Ely. For the next 24 hours Becky and Chad will be “Rooming In”. This means that they will be with him constantly and will be doing all the procedures themselves with a nurse watching over their shoulder. If all goes well they will be able to leave with Blake in the morning. The only thing that could get in the way is if there are issues with his feeding tube. They have started the transition, but it is a process to getting him to where he will be able to take the full amount of food every three hours.

They would do another swallow test in three weeks, but the ENT doesn’t want to see him for six weeks, so they will be back to SLC in four to six weeks. Then they will do another swallow test with the scope so they can see what is going on and if he fails again, why. Then they will scope down around his vocal cords and see what they are doing.

Chad and Becky are excited to be going home. Chad said that this is going to be their life so they are ready to get started on it and try to get things back to normal with their family.

Blake did get a good night of sleep last night. It will be good to get him home in a controlled environment so he can rest better.

A New Week

Tired. I think that is how everyone is feeling. Becky and Chad are emotionally, mentally, and physically tired. Blake is also tired. He is having a pretty rough time stuck in his room. It is right by the door and every time he gets to sleep someone or some noise wakes him and he wants to see what is going on. I think he is tired of having those tubes down his nose, and not being able to do much. This morning is another swallow test. We hope and pray that this will go well. Otherwise they will not do another one for six weeks. This means he will most likely have to stay in SLC since Ely does not have the capability to deal with his feeding tube. (i think that is right) I know that Chad and Becky are so grateful for the prayers and for all that fasted yesterday on Blake's behalf. Thank you so much for your calls, comments, care, concern and support during this trial.



I think that everyone passed the care class. I have posted a video of Blake getting his trach tube changed. It is pretty hard for me to watch, but it must be so much harder to do. While the tube is out, Blake can't breath. It is hard to see the fear in his eyes. I hope that I have good news this afternoon about the swallow test.



Please let Katie know how good of a job she does on the blog and help her to understand that she needs to take it over... It is a girl thing anyway, but I have never been able to convince her that it should be her responsibility. Things have been going well at the house. We are pretty much moved out of Rexburg, but have a weeks worth of work cleaning, patching, painting, and shampooing to do. We will put our place on hold until we are done there.

Yesterday I was able to seal the shower tile and we put a lot of stuff away in drawers and cupboards. It is nice to not have to maneuver through the maze of totes and boxes. My next big step will be to pull out the oven hood and install an outlet plug, then mount our microwave over the stove. So far all of our used appliances have worked. We had a scare with the dryer on Saturday. It was making a bad noise like there was a warn out bearing or something, but it went away??? At least that one was a free gift so I wont feel as bad if it needs to be replaced.

We had a good experience at our new ward yesterday. EVERYONE was so friendly and hospitable. Then one of our neighbors stopped by list night with some of the best sticky buns I have ever had. They are great people. Their daughter and her family live by them to the south of us, and his father lives to the north. All great people. They told me that our original house was a sheep ranchers place up by bone, and that they had hauled it down by horse and put it in Iona. I am excited to find out more history about the place. We also met some folks at church that knew Katie's family. One guy had taught Katie's dad in church, and one gal had gone to school with Katie's aunt, Georgia.

Quick Saturday P.M. Update

Well, I guess almost everything is going well. Things worked out good with Aerocare, but not so good with the swallow test. He failed. Not only did he fail, but it sounds like he did worse than before the trach surgery??? I really do not know what that means other than that they will not let him go to Ely with the feeding tube he has now.




It sounds like everyone is doing well with the training. It is kind of hard to watch them do the switching of his trach tube. I am sure he will get used to it. It is a pretty quick process because Blake is without oxygen while the tube is out. We have been so busy working on both our house and getting the town house ready to rent out. I am sorry that we have taken so long to update because I know that many are looking at this. I will have a better one tomorrow.

Blake is doing great and so far everything is looking good today. The swallow testing facility is really booked today, so one concern is that they will not be able to do the test for Blake today. The other night, however, Becky & Chad met a woman who works in that department (it's a small world) on the Trax when they were headed to the Jazz game. She is trying to get them in today! If it doesn't happen today, then they will have to do it Monday since that department does not do testing over the weekends. Another issue was that they were having a difficult time finding anyone in Ely who could provide the necessary equipment for Blake's trach tube. There are adults in Ely who have trach tubes, but for some reason no one wanted to supply or couldn't supply pediatric needs. Thankfully, a very kind woman from Ely worked it out with her boss in Vegas to take care of Blake's needs. This was very very much appreciated because without the proper equipment, Blake would not be able to go home to Ely. We would like to extend a huge THANK YOU to Mrs. Ramero for making it possible for Blake to be properly taken care of at home!!!

Also, Jared completed the grouting project around our shower this morning! While I am writing in the blog I should also take time to tell everyone how amazing he is! Since we purchased this home Jared has: Cleaned, torn up all of the flooring, installed a toilet,tiled the kitchen, bathroom, entry way, laundry area (including a crawlspace door), pantry floor, fireplace area, and the shower surround. He also built a pantry...with shelves and everything (I am still impressed)! He has also dealt with a lot of unforeseen issues such as a rotting subfloor in the bathroom, mold in the laundry area, uneven walls/floors, and an electrical problem with the well pump. He is amazing, and since he would never write about himself in the blog...I thought I should let everyone know. I love you, Jared.

Friday Update

The Update:

Dear Family and Friends,
Jared is dilligently working on the tile around our shower this morning, so this is officially my first post to our blog. He is sending pictures from his phone, so there are more cute pictures of Blake to look forward to. The update of this morning is that Blake's trach tube was successfully changed out this morning at 6:00. Everything seems to be going well. We think he is scheduled to undergo another swallow test later this afternoon (we are hoping for outstanding results). Thank you all for your support and prayers, they have truly blessed the Smith family through this trying time.



Some Thoughts:

One of my favorite quotes says, "We cannot always control the circumstances in our lives, but we can control our attitude toward them" –Author Unknown. I think that Becky brought this quote to life for me the other night (when Jared and I were in Salt Lake). Becky said that she didn't know what they were supposed to learn from this experience, but she was sure it happened for a reason. She has been extremely strong throughout this whole process and I was grateful for and humbled by her example. I am also so impressed and grateful for all of the prayers and thoughts that have gone out on Blake's behalf. It is surprising how people can rally together and show support when someone is experiencing some difficulties. So...Thank You To All Who Have Been So Kind To Remember Blake & The Smith Family!

Thursday Lunch Report

He is still doing well and has been off the ventilator since yesterday afternoon. They will change his trach tomorrow morning and then try another swallow test. If all goes well they should be able to put him out on the floor.

Thursday Morning Report

Blake had a really good night. Everything seems to be going in the right direction. They may be able to take him out of the PICU as early as tomorrow and put him on the floor. Mom said he was cute yesterday. He is still sedated and a little woozy, but he was enjoying looking at his picture books and toys and smiling.



Everyone else is pretty tired. Darren Williams of the Utah Jazz stopped by yesterday to drop off some tickets for last night’s game. I think that it was good for everyone to get away for a bit, but it turned into a late night because they went back up to check on Blake before going to bed. I am sure they are all quite tired to say the least. Too bad the Jazz didn’t have a better showing last night.



Becky said that they have really appreciated all the support and comments from everyone.

Blake's Trach Tube

Blake seemed to be doing pretty well last night and this morning. They are still fighting the virus's and pneumonia. They have been turning down his oxygen and he is doing well with it. His numbers are WAY GOOD today and they may even release him from the PICU and put him on the floor Friday. He is watching people and following them with his eyes and even cracking a occasional smile.

They are learning a lot from their care training. I think that it is going to be life changing for those who are going to step up and help with Blake.

Post Surgery Update From Chad

He is out of surgery and back in his room. As soon as Becky was at his bedside he looked up at her and gave her a big smile. He is still a bit woozy and they will keep him sedated, but not paralyzed like before. The trachea tube is into and tied around the neck, will be able to move around and look side to side but be a little drunk. Friday morning they will do the first trachea tube change. From that point on Chad and Becky will do it themselves. He is still on the ventilator and will they will try weaning him off soon. The body will put a lot of mucus out because of the surgery. There will be a lot of suctioning for the next few months. They will try to get him off ventilator in the next few days. He can cough now and that brings a lot of mucus up. The flu and pneumonia bugs are making a lot of mucus as well and they were able to suck a lot of stuff out of his lungs during the surgery so that makes things a lot better for him. He is still on antibiotics. They have not talked about when they would do a swallow test yet. Their four days of care classes will start tomorrow and go from 12-2 tomorrow, then 10-12 for the following three days and they will learn more about swallow studies, how to care for Blake, etc. A discharge nurse talked to them today and said they are working on dealing with Ely to have everything hooked up for them when they head to Ely.

Blake's parents are so happy to be on a road to recovery. Chad said that he and Becky are "Pretty crappin excited!" Blake is awake enough that knows that his folks are there with him. He will be in the PICU for three to five days, but it is too soon to predict when he would be released. They will not be able to hold him till Friday.

Tuesday Afternoon

The doctors decided that they would go ahead with the surgery today since they would have to wait till Thursday. He is out of surgery and they have been told that all went well. He is in recovery and they should be able to see him in 10-20 min. I will have an update after they have been able to see him and talk more with the medical staff.

They are in with him now. Everything seems to be going well.

Tuesday Morning, The Rollercoaster Continues...

Blake's numbers were really good yesterday afternoon and through the night. They woke him up yesterday and he was so excited and moving around so much that he had to be restrained. I think it was good for his parents to see him out of his lifeless trance. They had to put him back to sleep because he was so active that he was in danger of pulling out one of his 50 tubes...

This morning it looked like everything was on for the surgery at 10:30. That has changed again... They have found what his viruses are. He has H flu, and M cat. I do not know what they are, but the Dr's do, and they can focus their treatments on those issues now. The PICU Dr. decided that she was not comfortable doing the surgery until those other issues are taken care of so surgery SHOULD be on for tomorrow. We just do not know when because Wed. is not a usual surgery day.

I am sure that it is getting quite frustrating to say the least. Every time things look good it seems like we take a step back.




It was good to visit with everyone for the weekend. Aaron and I were working on the house Saturday and decided that we just needed to get down there, so we tied up what we were doing and hit the road and met up with Katie along the way. She was at a conference at ISU that day. We were able to go with Chad and Aleah to the zoo. We had a lot of fun with that. Us guys went to a movie one night and the gals went out to dinner, so we were able to do a few things to rest our minds. I am really glad that we just went down. If we kept waiting for them to tell us to come then we would never end up going. I think sometimes you just need to get in the car and go.

We bumped into a gal from our church in Rexburg on Sunday and saw her a few other times. Her little one was 4 weeks early and hasn't spent a day out of the hospital. Last week he was diagnosed with RSV and life flighted to Primary Children's. It was nice for both of us to see a familiar face and visit a little bit. We really do not know the family that well, but we have their other little boy in our nursery class.

One last thing. Becky's good friend, Tiffany, is working on setting up an account for people to donate money to help the Smiths. Chad is working on getting some leave donated, but has been on leave without pay for the last week and a half. I know that every little bit can help. I will keep you posted as this fund gets set up. Also, if anyone is reading this and could leave a comment for Chad and Becky I think they would really appreciate it. Thanks again for all the prayers and support.

Monday Mid-Morning Update

It seems like every time that things are going good there is always a setback. They found some infection in Blake's lungs this morning. They think it may be a little bit of pneumonia. There will be no surgery today, and probably not tell the end of the week. People keep asking me what they can do or if they need any donations,and I really do not know??? Prayers are my only answer. I have no idea how long they will be in here or what their insurance/financial situation is or will be. I will try to have more answers.

Monday Morning

Blake is stable. He had a good night after midnight. They will go forward with the surgery at about 10:25 this morning. I will let you know when he is out and how things are going.

Sunday Night

This is Blake with Chad's mom when she was in town a few nights ago.

I really don't know what to type because I don't have a lot of information. Things have kind of been up and down today. This morning Blake's numbers were not where we would want them but things stabilized pretty well by 3 p.m. Then later tonight we kind of rough. His temp was 101. something and his heart rate was a bit elevated. They tried to take blood, but had a pretty hard time. I am not sure if it was incompetence, or if it is just because he is so little, but they poked and poked and did not end up getting any blood. They did take a swab in his throat, but that takes a couple days to get the results. They are trying to rule out infection before they do the surgery tomorrow at 11. Becky is exhausted and trying to get some rest and Chad is up at the hospital right now. I really hope all goes well through the night and that they are able to operate tomorrow.

Report From Saturday Night

Blake is very peaceful. He is sedated and breathing well with the intabated tube. This should be good for everyone as he will have time to rest up for his surgery. There really isn't any other news. Tomorrow will be the surgery so please keep them in your prayers.

Saturday Update

I do not have much time with the computer. Blake had a pretty rough day yesterday, and was worse this morning. They decided to intabate to help with his breathing and will keep him sedated until Monday when they do the surgery. Chad was a real trooper and stayed in the room while they put the breathing tube. They had a tough time with the procedure and I am sure it was very hard for Chad to watch his little boy go through that pain. I hope that he will be peaceful the next couple days and get the rest he needs for the surgery on Monday. I will try to have a better update tonight.

Again, thanks for all of the love and support to the Smith family.

Friday Morning Report

I talked to Becky this morning and there is really nothing new. It sounds like Blake is still working quite hard to breath. The Dr. seems to think that he would have been able to pass his swallow test if he had not been so exhausted from breathing. It is amazing that he was able to make it this long without having some other ill effects with his breathing or serious infection in his lungs. He is a real fighter and he has two very loving and concerned parents that take such good care of him. The surgery is still on for Monday. Aleah will meet with the people that will train everyone on how to care for Blake that morning. I guess they have a doll and they will show her what they are doing and try to explain how she can help and how to treat him etc. Then everyone else will be training Tuesday-Friday. They will not release Blake until they feel comfortable with Chad and Becky's ability to care for him with the Trachea Tube.

The Move

Katie LOVES the carpet. She was just rolling back and forth all afternoon. It looks like a whole new house, and we love it! We have moved almost everything down. Just have the freezer, kitchen stuff, cloths, and a few other odds and ends to bring down. I hope that we can maybe get the stuff we have brought down put away and in place before we bring the rest. It sure does look like a home now. We still need to tile the base and the shower. Aaron is working on that for me now, and we should have most of it laid today.





I never thought I would be so happy that my brother drove a mini-van. It has been a pretty nice resource for moving, and was so nice for getting my heads down in one trip. Pretty exciting stuff.

CARPET!!!

Waiting Game

It is a little after midnight and I am just getting to the computer. We did a lot of moving today and we are all very tired.

It looks like they will do the Tracheotomy on Monday. They did another scope today and found that the Botox did work, just not well enough. Blake is getting pretty irritable and is having to work quite hard to breath. His hands are covered so he can’t pull out his feeding tube, but that means he can’t use them to play with his toys etc. I guess that there is no reason that we can’t keep hoping and praying that things change for the better by Monday.

I haven’t looked at the comments yet, but thank you for them. I am sure that Chad and Becky will enjoy reading them.

Thursday Morning Report

I am sorry if I am direct and to the point today. Aaron made it up to my place last night and we unloaded our first load of furniture and have been loading all morning long to try to get as much moved out while I have his help, so I am a little rushed this morning.

Blake is still working hard to breath. The Dr. that did the swallow test said that he believes that Blake may be working so hard to breath that he is not able to swallow. It is really looking like they will end up doing a Tracheotomy. If they do not do it today they can’t get him in tell Monday. They will do another scope today to see if the Botox is working at all before they go with the surgery. The Dr. and his staff have been great. An inter is going to be in the meeting today with the tracheotomy specialist as they explain things to Chad and Becky about the surgery and care. Dr. Park says that Blake will be a brand new boy with this surgery and will be so much more comfortable, and would hopefully be able to eat on his own.

The idea behind the trach would be that it would give two years for Blake to grow and be able to breath and be healthy. Two years of growth will mean his vocal cords and trachea, and everything else, will be bigger and either open up on it’s own, or give them enough to work with. He is still such a little guy that they really can’t do anything other than the Tracheotomy.
Dr. Park really praised Chad and Becky on their ability to take such good care of Blake with his condition. Although he is pretty skinny for his height, he has been given the proper nutrients to be strong/healthy in all other areas.

I hope to have more info this afternoon. It may be later before I can get to a computer, but I will do my best to post as soon as I get new updates.

Wednessday Report

Chad said that his breathing seems a little worse than before, but it is a different pitch. They have found some fluid in his upper lungs but are not too worried about it. It seems to be consistent with cold/flu type symptoms. Aleah was with them over the weekend and she was sick. They think that maybe the breathing noise is associated with the breathing noise. The important thing test today was the Swallow Test which he failed miserably according to Chad. They started Blake with a light fluid and moved up to the constancy of baby food and he aspirated the food. When someone with healthy vocal cords swallows “down the wrong pipe” they cough and push the stuff back up and keep it out of the lungs. Blake is not able to do that so the food/drink would go into his lungs and cause a serious infection. The feeding tube that he had before was straight into his stomach. To avoid any chance of him spitting up and aspirating, they replaced this NG tube with a NJ tube. This one goes into a sphincter from his stomach straight into his intestines. This way he gets the needed nutrition, but has no chance of aspiration. They will continue to monitor Blake for a few days to see how the Botox works out. Chad does not feel like it is going to work, although he and Becky are trying to stay as positive and hopeful as possible. All of Blake’s Numbers are good enough that they could take him out of the ICU and put him on the floor. Right now there is room in ICU and Chad is hoping that they will keep Blake in there as long as they can since he will only be sharing his nurse with one other baby. With the NJ tube Blake will not be allowed to go back to Ely. They do not know if Ely even has the capability to deal with this type of feeding tube.

Tomorrow they are sending someone in to talk with Becky and Chad about the trachea tube. They are going to give the Botox a try, but if it fails, the trachea tube will be the only other alternative. This of course sounds very scary. We will have more info about it after the consultation.

My brother Aaron is in right now visiting with them. He was on his way to Idaho to help me with our house, but may end up staying down there if he could be of any help at all. Chad said that it was very helpful that they were able to see Aaron and others. I know that they appreciate all the support and prayers. Becky was telling me this morning about how even with all of this they were able to see the other blessings in their lives. I guess that there are a lot of other families in there with children that are not doing near as well as little Blake. Please do not feel put off or offended if they are not able to take your calls or respond. They are not allowed to talk on phones in the ICU, and I am sure you can imagine how tired they are when they leave. If you have any comments you would like to leave for them they are checking this blog and would be able to see them. If anyone has any suggestions or request for types of info feel free to comment as well and I will try to appease you.

Thank you again for all of your support and prayers.

The Tube Is Out!

They got the tube out and Blake is breathing well on his own. It sounds like they will still need another day to see if the Botox is working. For now we can be very hopeful.

A Good Night

Blake had a good night. They are slowly turning down his O2 and he seems to be doing well with that. The nurse seemed very optimistic about his recovery progress. Becky and Chad were just heading up the elevator a little after 8 this morning. They can't use their phones when they are in ICU so I am not sure when we will get another update. Sometime today they are planning on taking the tube out and then they will be able to see how the Botox is working. Mom said that the nurses usually do that, but the Dr. wanted to be there for it.

The medical staff could not believe that Blake had been living this long with the condition. They were really appalled that he had been released from Primary Children's six weeks ago without seeing the specialist. They said that he was a ticking time bomb... Just another case of medical failures. I know that we have the best medicine around and am so grateful for the miracles they have preformed on me and my family. This is just a reminder that you have to look out for your own, ask questions, be demanding, write things down, research on your own, and follow-up!

-- I just got a call from Becky. The Dr. is in the room right now with Chad and they are taking the tube out. The Dr. is very optimistic, and seems to be very well regarded around the area. They really liked the anaesthesiologist as well. It could be another day or so to know for sure how the Botox is doing, but it seems like it is going well. He was breathing around the tube which was a good sign because he was able to have enough room around the tube that he could get air. The next thing will be figuring out how the best way will be to feed him.

Wait and see...

I guess it is a wait and see thing now. Tomorrow they will take the breathing tube out and they should be able to see if the Botox is doing it's job. It is tough to see the little guy hooked up to all those tubes and cords.

Recovery

Blake is in recovery. Well, he is probably out by now and with his mom and dad in the ICU. They didn't find anything new, but they did go ahead with the Botox injection. They have to wait to see if it had any affect. He will be in ICU for 24 hours and have a 1 on 1 nurse the whole time. He will have a breathing tube down his nose. We still have no idea how long he will have to stay in there. He could be released as early as tomorrow. I hope to have more info soon.

Blake

My sister’s son has been diagnosed with a condition called Bilateral True Vocal Paralysis. Other cases seem to be linked to people that have other medical conditions. They did a scan on his brain and said everything was fine up there. Healthy vocal cords open up so that air can pass through the trachea. Both of his cords are paralyzed leaving him a constricted opening for breathing. They are planned to do a one hour surgery today (if he is healthy enough) to try to see what exactly is going on in there. I have only been told two options to try to make things better. Option one, which they may do today, is to inject one of his vocal cords with Botox. I guess that it will cause the cord to move and open up his airway. The worst case scenario would be that they would have to put in a trachea tube. He would have to have that for two years. That would require a lot of care. I have no idea if it is something that he will grow out of etc. I do know that it does not stop him from being able to speak etc. They are with the best of the best Dr. but he still only sees about two of these cases a year. The surgery will be done at primary children’s and they will keep him in ICU for a couple days after. I hope to have more details tonight. Please keep the Smiths in your prayers.

Getting there...

We have almost everything ready for carpet. Katie needs to paint the master bedroom and some trim/door casing, and the pantry if I ever get done with my mud job. I have to tile the pantry floor, tile the base around the floor tile, tile the wall behind the fireplace and the tub, and grout almost all of the tile. Things have been going slowly because I have been sick and the bad weather kept Katie in Rexburg last night. We aren't getting carpet tell Wednesday, so we should be able to get everything in line by then. Aaron is going to come up on his Spring Break and help us move and get the townhouse ready to rent. Our hopes are to be sleeping in there by next weekend.