Friday June 25th Swallow Test Failed

Blake is back at Primary Children's today for a check-up and swallow test. He was able to pass the first part, the yogurt like substance, but failed the rest. This means that he will now have to have a G-Tube surgically placed into his stomach. I guess that it is not good to have the nose tube long term. They will do the surgery on Monday. Mom also said that they are going to put in a new trach because he is starting to outgrow the original one.

Otherwise he has been doing very well at home.

Dad will be in on Thursday to see his Dr. for his consultation for his artery issue. Who knows what they will end up doing for him or when they will do it.

Things went well with Blake's surgery yesterday. It ended up being a less invasive process then they had originally anticipated. The tube just goes right into his stomach and does not need to go directly into his intestines. Other than being a little grumpy when he woke up, I think everything went well and they will release him today or tomorrow.

Tough Night

I am not sure on the details yet, but Becky sent me a quick message that said they had a tough night with the vent. Here are a few pictures she did send from the past two days.

Going Home

The equipment got to SLC last night. This means that Blake should be released today and will be headed back to Ely. Everyone is excited for his return. Yesterday they got to take him outside. He hasn't been able to enjoy the outside air for a very long time.

I love my Grandpa Fisher.

Chad, Becky and Blake are on their way home. Everything is going well with Blake and I hope he is able to stay at home for a very long time.

Still No News

I tried calling them in SLC and no answer. They are still waiting for the equipment to get there before they will let them go home. Here are some pics from the past two days.

playing with Mom.

Aweee we love our Blake

Another Good Day!

It sounds like things are still good. Becky did her "rooming in" last night. He seems pretty happy.

Blake is still doing well. The hold up right now is getting the respirator machine to SLC so they can have it for the trip to Ely. I guess they will more today. Nothing ever happens on a weekend. Here are some pictures and videos of the happy boy.

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Field Trip

Things seemed pretty good yesterday. The main thing they are working on now is getting the equipment set up in Ely. Here is a pic of the little guy ready to go on a field trip. Looks like a lot of equipment that he is hooked up to there. I am not sure how much of that he will need when he is out of the hospital.

Blake is getting his ventilator. They have been trying like mad to find someone that would service Ely. As of a few hours ago it was looking like Becky was going to have to make SLC or Elko her permanent residence. I don't know all of the details other than things worked out, Becky is very grateful and happy, and Blake is too.

It sounds like he is doing very well and the the doctors and therapist are very impressed with his progress. The PT said that Blake is doing very well, especially since he has been down for months and not able to do much. He responds well and is able to do everything they want him to. It sounds like he will still be in there for a little bit. I believe that the machine will be shipped to SLC so they have it with them as the drive home.

Mom, Chad, and Aleah were in for a couple days this week for training on the machine. I really didn't get a lot of information during that time to post. I hope it is because things were going so well with Blake that everyone was able visit and have an enjoyable time.

I hope they are able to get him home very soon. My grandpa Fred has been in the hospital in Hawthorn, NV for almost a week. We only found out about it a couple days ago because they didn't want us to worry. Grandma Margie says that he has been doing better, but he is not in good enough shape for her to take care of him on her own at home. They had to give him two units of blood and have been messing with his meds. He had been hallucinating and was really tired out. I know that it is really hard for dad right now because he knows he is where he needs to be helping Becky and Blake, but I am sure that he wants to be with his dad as well.

Back To PICU

First off, Blake’s numbers got really bad yesterday (Friday) so they did some more tests and found that he now has a Rhino Virus, (the same virus that his roommate the other day had???) his lung is collapsed, and he is having a really hard time breathing. So, they decided that it was back to the PICU for Blake. It will be more of the same as the other times. Ventilator/CPAP help for breathing and trying to give him stuff to get rid of the virus. It also sounds like they will be sending Becky home with a ventilator for Blake and he will be using it when he sleeps. I do not have the slightest idea of when they will be going home. It is supposed to be a linear process. Sick-PICU-On the Floor-Check-out of hospital-Go home… He is making a circle from PICU to the floor. Poor guy shouldn’t have to go through this.

Dad was feeling pretty bad because he thought he may have gotten Blake sick. He was feeling something in his throat and his eyes have been burning like crazy. He saw a Dr. and they said that it was allergies and acid reflux. He has never really had allergies in Nevada, but I guess that he has never spent three weeks in SLC either

Blake seems to be doing OK I guess. They put him back onto the floor and said that he was ready to go home. Before they can take him home they will need to receive training on how to use the breathing machine that Blake will use at night. They will also have to have that equipment in place at their home in Ely. Mom said maybe Wed. would be the day that they go home. Who really knows.

I think they were going to be doing some training today on the ventilator machine. He seemed to be doing pretty well yesterday though. Here are some pics that dad sent from today. He looks to be pretty happy.

What a cute happy little Boy.

Better Numbers/ Happy Boy

His numbers are the best since they have been there. They did a chest x-ray and it looks like the lung is open. Not sure how it happened so quickly. Want a Broncio Scope after Blake needs a little less O2 support. Great Nurse and Great Dr. The nurse is doing a very good job of advocating for Blake. They did all the screenings on his viruses and he is virus free, as far as they know. He got to go out and look at the fish in the hall and take a trip and he LOVE IT. It was his first field trip in quite a while. He is still pretty tired and warn out. He isn’t at his happiest, but seems content and calm.

"feeling a little better today."

Super cute Boy, we sure love him.

Hanging out with Mom.

Same Old Story

They did an x-ray and found that Blake’s upper right lobe of his lung has a significant collapse. It is pretty tough for him to breath, and he may have to go back into PICU if they decide they need to put him on the CPAP. Becky said the Dr. told them that if they go in they need to request a Bronco Scope to see WHY THIS IS HAPPENING. Becky said that this is the most collapse she has seen on any of his x-rays, and the Dr. used the word significant. Early this afternoon they will know if they will keep him on the 4th floor or send him back down to the PICU. DR. Dickerson is the Dr. and he is VERY good. He is “right on the money and provides lots of information.” They did test his blood gasses and they are good. Blake is tiring out quite a bit, but he does look better than he did yesterday. He is pretty tired. It seems like his breathing is worse when he is sleeping or lying down.

Blake is able to play some games with grandpa. When grandpa isn’t looking he will throw a toy on the floor. Grandpa picks it up, sanitizes it, and put it back in Blake’s bed. I guess he keeps doing this and grandpa hasn’t quite caught onto his game.

It sounds like today is a better day for dad and Becky. Better spirits today. Yesterday was kind of gloomy, and they were tired and warn out and had all that other stuff going on with the roommate etc.

I asked Becky if she was going to get another degree while she is in there. She said she is looking into getting her associates degree in nursing since she has already done a semester so far.

I talked to Chad last night and he said that they did not take him up to the PICU and that his numbers were not peaking like before.

Numbers

Blake's numbers were bad again today. This RSV is just not letting go... Everyone seems to be doing well. Becky had to take a call from Chad so I didn't get much of an update. I should have something better tomorrow.

I just talked to Becky for a little bit. She said that Blake’s repertory numbers were up again last night, in the e 80’s which is pretty high. Becky said that she could tell that he had taken a step back yesterday. He was just not himself. They were testing his blood gasses. Becky said something about Blake having a difficult time with converting O2 from in his blood. Becky doesn’t see them going home tomorrow. Becky said that she was very grateful that dad has been there with her; otherwise she would have crashed by now. Yesterday was not a very good day for Becky. They had poor help, and then they got a bad neighbor. The kid next to them would not stop screaming and he had a different virus than Blake so Becky stayed on them until they put the kid in a different room. The screaming was so rough on Blake that he was covering his ears with his hands.

Becky is more charged up today. I guess with all the ups and downs you are going to have a bad day here and there. She is very grateful for all of the support everyone has shown and the love she has felt for her and her family.


Hopefully they will be able to talk to a Dr. today and get more answers so I can have a better update this afternoon

Just got this text from Becky:
-going 2 be here a while longer. sadly taking another bad turn and now back to extra oxygen and really high respiratory rates. doing lots of tests today too see what is going on or if they can do something to make it better. still not an ICU candidate just yet

Blake Update

This is from an email that my dad sent me today, and above is the most recent picture I have of Blake. Looks like he is doing pretty well.


Blake’s respiratory rate is finally back down now where it needs to be. I hope it lasts this time. He is also responding to the treatment for the infection around the stoma. Basically he drew a bad weekend nurse, and it cost him some recovery time and he is making up for it today. It looks promising that we may be able to go home tomorrow or the next day if all continues well( how many time have I thought that in the past 15 days).

Becky is doing well considering all. It was a great weekend for her to spend with her husband and daughter for Mother’s Day. Maurine came to and we had an enjoyable time as well. Blake was very happy overall, BUT we kind of lost track of who was doing what and after everyone had left yesterday afternoon, things began to go wrong with some of his numbers, probably from the previous poor attention and lack of experience by the nurses Blake drew.

Alas, live and learn and gratefully get a chance to do better. He is more excited and lively than Becky has EVER seen him at home. It goes to show that being able to breathe well is not overrated, eh. He is so precious and hard to believe the love he can demonstrate in just his eyes alone, then that famous smile comes along melts everyone, even some of the hard-line custodians, ha. Nurses come from far and wide to get a peek at him, and some that have worked with him previously also manage to get an excuse to come see him again. Over all the care has been outstanding and we are all so grateful for that and the many many prayers on his and his families behalf. (keep them coming, ha)

It is kind of scary in a way to think of leaving as a reality is so very near. Although it is long awaited, I am a bit nervous of what we may have to handle once we get home. We are probably now about as ready as we can ever be and I hope that we do not have to be back in here under these circumstances again.

Loving my Grandma Fisher

Sounds like things have been going really well for Blake. The only issue is the amount of suction they are doing is still quite a bit more than where the Dr. wants it to be. Mom, Chad, and Aleah went in to visit for the weekend. Blake was really excited to see them. It was a good Mother's Day weekend for mom and Becky to be able to be together with everyone. Blake was able to get down on the floor and play with is toys. He seems to be recovering quite well. I think if the suction thing was under control.

I am on the phone with Becky right now and it sounds like he will be in at least another day. His trach wound is kind of gross so they are working on getting that cleaned up. No suction yet today and he has been coughing everything up himself. He has been really cute and is a celebrity there. All of the nurses end up in his room to see him. I guess he is quite the charmer and flirts with all of the nurses.

Super cute Blake

I talked to Becky around 11. She said that he looks good and had a good night. They are weening him off of the oxygen and he is doing well with that. They have been doing a lot of suctioning and the Dr. wants them to not do it so frequently. Becky said that he slept all night and even had a nap this morning. He seems to have more endurance and was having a good time "playing, smiling, dancing, and just doing his thing." Still not sure what day they will send them home.

What a happy Boy!

Love Snuggling this Sweet Blake

Movin On Up...

Blake has moved up to the fourth floor. I was in a meeting all morning so I have yet to talk to Becky, but she did send me some messages. He seems to be doing well and sure does look a lot better. I will try to get more info by the end of the day.

Not much new. I guess yesterday was a good day. He still has his ups and downs, but seems to be doing well outside of the PICU. They gave him a bath yesterday and got him all cleaned up. Becky told me this morning that the could be released as early as tomorrow, but who really knows. I will let you know once they are on the road... They hadn't been up to the hospital yet, so maybe Becky will have more for me later.

Another Setback

I really do not know what any of this means as far as his recovery, but Blake's numbers have gone up unexpectedly and they have had to put him back on the ventilator for assistance. It was kind of weird because things were looking so well and they had been talking about releasing him soon, then this happened.

Here is the text that I got from Becky this morning.
-Here is the latest and greatest. Blake was about to leave ICU this morning when his numbers started going crazy like when we came in Monday. So now he is on the ventilator getting something called c-pap and he seems to be lots better and loves hearing himself babble with it on. So now this for maybe a couple of days and then 24 of observation in ICU to see if he is strong enough to breathe on his own before he can move onto a regular room. What a rocky road but he is a champ!

Starting A New Week In Primary Children's

It has been a week since they went BACK into Utah. As of yesterday afternoon Blake was still in ICU. It seems like a bit of a roller coaster on his numbers. Just as I am typing this I got a message from Becky: -Blakey went back on the c pap for more pressure support at 4:30 am because he started breathing hard again. So still in ICU for a bit ... no clue when he will be ready for a regular room.

Poor guy. You just can't count on anything until it happens.just talked to Becky for a min. She said that they keep having to put him on the assist. She did get to hold him today. It sounds like he gets spurts of energy, then wares himself out. She has found that if she stays in the room that Blake wont sleep, so she had just left so he could get some rest. I guess he feels like he needs to entertain her...:)

I am sure that it is getting tough for Becky to be away from her home and her family so much. I am glad that dad has been in there and has been doing such a good job of supporting and helping out. Thanks to all of you for your thoughts and prayers as well.

Milestone



Blake is waving! 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.

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.

What Blake likes.

No Sleep, PICU,Over Achiever

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.

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.

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.

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.

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.



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.

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.

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.

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.

Still in the hospital

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.

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.

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.

Care class training

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.

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.