What’s Happening

December 20, 2016

Isaac is now off vent the whole day. We had to give him some O2 here and there because the boy is so active. Today, he did not even take a nap. He has been on the go since he woke up this morning. He woke up at around 3AM wanting to play. I managed to put him back to sleep at around 7AM just before his day nurse came. He woke up at 9:30AM ready to party!

December 17, 2016

Isaac got sick again and this time we had to give him steroids. It was a scary moment when we had to give him 4liters of O2 for a few minutes during morning treatment.He has never needed that much in a long, long time. He went back on the vent and of course on the noisy oxygen concentrator. His doctor also decided to increase his pressure support from 2 to 10. It was a big jump but they wanted to make sure he has enough support so he can breathe and sleep better and get well soon! So this Wednesday they went down on the pressure support and then again on Thursday. We decided to try to get him off the vent for a few hours twice on Friday. He was good for it and really enjoyed being able to walk around untethered, I should say. We had to give him some oxygen for a while because he was so active and excited.

So the video you see below is him being off the vent for the first time since he got sick last week around Wednesday. Happy viewing!

December 3, 2016

Isaac is making great strides in the use of his gait trainer! He loves being in it because he can go places. PT took the chest supports off and he only has it to support his back a little. She even took off the seat while walking and he still did great! She did a little dance and our “drill sergeant” (aka PT) does not do dances! She was so excited about Isaac’s progress!

We are also making the transition to a trache collar for sleeping at night. He will be attached to an ETCO2 monitor for a while to monitor his CO2. I am excited but at the same time nervous. I want him to do good with this transition but I don’t know if he will like it. Everything always happens according to Isaac’s plan which is probably God’s plan dictated to Isaac 🙂 He was supposed to be weaned off the pressure support and be only on PEEP but the vent was not sensitive enough to detect his breaths and kept alarming “apnea” (not true, because I could see the rise and fall of his chest). So the doctor decided that he was ready to be off the vent! Wow! I thought this day was not in our near future. I pray that God give us guidance and wisdom to tackle this new situation. May God cover Isaac in His blood, through Jesus Christ, Amen!





November 27,2016

I Thessalonians 5:18 says: In everything give thanks: for that is the will of God in Christ Jesus concerning you.

I thought this was a hard thing for us mere mortals to do. When something bad happens to you, its difficult, even painful to still give thanks. I heard Pastor Charles Stanley preach today on TV and he explained that this verse does not mean you give thanks to the circumstances but to give thanks because in that moment we know that God is with us and that he will see us through to the end. Doing it wholeheartedly is going to be a work in progress but we should start saying it and keep on saying it because just like the song says, ” it will get better, by and by”. God knows what is in our hearts. He knows the innermost pain that we feel. We need to trust that He will never leave us alone.

Isaac got sick two weeks ago and as usual even if its just a cold it threw everything in chaos. He had to go back to the ventilator and on the noisy oxygen concentrator. Those are two sounds that are getting harder and harder for me to bear. The ventilator is fine because he is still on it at night and during treatments. But I try my best to keep him off the oxygen concentrator by using my oxygen tanks. I went through them so quickly because he was really needing oxygen all day and all night. I couldn’t let my selfish feelings get in the way so I finally had to turn on the concentrator. He finally got better  after almost two agonizing weeks and now he is sprinting off the vent and is on room air just like the champ he is! We still have to watch his work of breathing and we need to make sure he does not get too tired but all in all we are in a good place right now. Thank God for small mercies!

 

 

November 7, 2016

It’s ironic that the days I feel so lonely and depressed are also the same days I feel so blessed and fortunate! How could that be? Well, after I have a few days of feeling sorry for myself I seem to just transition to feeling like life has been so good to us and that I am the luckiest person alive! During the days I feel sad I send my husband to get me sandwiches, chips, cookies, candy, chocolate, a favorite take out food, etc. My husband gladly obliges and does not even complain about all the weirdness. Its also a time when I refuse flat out to take showers. Well, I refuse at first then I realize I will be rocking Isaac to sleep so I have to be clean.

Today, was just a weird day altogether. Isaac woke up at 5am and decided it was play time! It took me two and a half hours to out him back to sleep. I would have let him stay awake but I saw that he was sleepy and he was jsut fighting to stay awake afraid to miss anything that might happen. He woke up at 10am just in time for his OT session and refused to take a nap this afternoon. I knew he was going to conk out at around 6pm so we gave him a bath and true enough I hadn’t even finished trache care and he was already whining and closing his eyes. He is still asleep right now at 8pm and the night nurse and I know that if he wakes up he will not go to sleep until 1am. So we are in for a treat! Pancakes at midnight!!! Woot! Woot!

Here is America’s favorite hero on Halloween!

Captain 'Merica!

Captain ‘Merica!

November 3, 2016

Isaac is crawling! I know this must seem mundane but we have almost given up wishing that he would crawl, his PT included!. He is doing an “army crawl” for which my PT corrected me and said it is called a “commando crawl”. I sure like the sound of that better… it sounded more cool!!! Hahaha! So the main venue now is the mat on the floor. With the exception of feeding time, when he is on the bouncer or walker, his favorite spot is the mat. It doesn’t matter if you don’t put toys in front of him he is just happy rolling around, pulling himself to sitting position, laying back down, and crawling to reach for my leg or the tv remote. We used to be able to have him on the mat while feeding and he can be busy with toys but now that he associates the mat with exploring it was a huge struggle trying to feed him while on the mat.

Our next goal is for him to start walking! We are still waiting for the gait trainer. The way everyone moves we might be able to get it by Christmas next year! It is exhausting to expect that people will do what they are supposed to do in a timely fashion so I have thrown up my hands in the air and just gave it up to God! Of course another major goal is to get him off the vent all day and all night. That really depends on Isaac and what God has planned for him. Even his NP and doctors can only plan and try to execute a strategy but it all boils down to the fact if Isaac is ready.

FYI- Medicaid is transitioning to managed care this month. I hope you have picked a plan already. As far as I know I picked from 3 MCO’s (Managed Care Organization). I hope that with this transition there will be better use of taxpayer’s money and medical fraud and abuse will be lessened or completely eradicated.

God bless us all in this coming elections!

October 25, 2016

One of my nurses asked me how my blog was going and I felt so guilty telling her that I haven’t been writing anything for a while now. To update everyone Isaac is still off vent most of the time with the exception of sleeping at night. We just went to his pulmonologist last week and he liked how Isaac was progressing overall. He was just disappointed that Isaac has not gained weight and even lost a little bit. For him, nutrition is important and I couldn’t agree more! He also wants Isaac to be weaned off the settings on the vent soon. There are some meds he needs to be weaned off and he is having a hard time getting off it. I am hoping it is only because of allergies this season. Although, what season, really? In Houston, Texas we do not really have fall. Just the allergies that come with it but not the beautiful sight of trees changing color and falling to the ground.

In other news, we are still progressing well in all the therapy areas. Some days are better than others of course and most of the time it depends on how he woke up that day. Thank God for patient therapists!

We continue to pray for protection this coming winter/flu/rsv season! God bless everyone!

September 28, 2016

Isaac is now off vent at all hours of the day except for when we give nebulizer treatments which usually lasts 10-15 min depending on how active he is. He has been doing so well off vent during his naps too! I thank God for taking care of Isaac everyday.Next step is to wean his minimal support settings on the vent since he still needs his vent at night. Right now I am busy trying to find a set-up to give his nebs so that we won’t need the vent to give it. We will find one, I know it.

I pray that the blood of Christ protect and keep Isaac and the rest of the family free from any sort of illness during this coming winter season.

God bless!

September 22,2016

Dear God,

Thank you for giving life to this day! It is such a precious thing when everything comes together in Your name!

Today we had a Fair Hearing with Medicaid which is TMHP (the contractor that implements the laws and regulations of Medicaid of Texas). It was a phone conference with someone from their legal team, a nurse, my physical therapist and me. It was an hour long conference! I will not bother you with the details but for any trache moms out there who are trying to be proactive with their children’s welfare I would advise you to always read the fine print in any correspondence that you get from them. It is their policy to quote the laws and procedures from their handbook to the parent to show them that what they are doing is above board. The problem is it is so hard to wade through it! I made a comment during the conference that the letter that my medical equipment company received was much simpler and easier to understand than the letter I received. Theirs had a paragraph that stated why they denied giving us the gait trainer. I got two pages of sections from their handbook!I said that I am an educated person but I really have no time for their legal jargon. I should have gotten the one they sent to the medical equipment company. They said that that is their policy of course. I just reiterated and told them I want it placed on record that their letters to parents are not user friendly.

At the end of it the nurse recommended that we resubmit an appeal and they told us exactly what they wanted to see in the appeal so that they might reconsider their decision. No matter what they decide, the physical therapist and I learned something about their process and while we cannot change the system, we can at least make the system work to our advantage from time to time! Well, that is if we are prepared to read the fine print (and I mean small letters!) and file appeals until we get what we want. It’s okay, our children fight to survive everyday, the least we can do is help them get what they need!

September 17,2016

Time is such a great thief! It has been a year and six months since we came home with Isaac on the home ventilator, trache, and gtube. He is off the ventilator now for a total of 6 hours a day! I did not even imagine that this day would come. God is great! I am sure that we would not have made it this far without his guidance. He is a normal, happy, naughty and carefree little boy and I would not have it any other way. So much has happened in Isaac’s development but I have been thinking that my development as a person has stopped. I was very wrong to think this way. In those weeks and months that I have taken cared of Isaac, I became someone I did not imagine I could be. I became a strong advocate for my son and made sure that his voice is heard. I also found out that my friends were worth their weight in gold because they never left my side! I am able to discern the nurses who would be a great fit for Isaac and for our home. I could talk to doctors about my son’s condition without feeling in awe of their vast knowledge. Why? Because I know my son best!

I cannot help but feel now that there is still something big in our future as a family that awaits us. That it is just there in the back of my mind, brewing, just raring to come out! Whatever it is I have no idea. My purpose in posting right now is to maybe put this thought out there into the world to see what the universe has in store for us. I have learned that with unceasing prayer, and a continuous conversation with God our Savior that He will tell me what it is I need to do for our future! I will let you know when that time comes!

Have a blessed day!

September 12, 2016

I was sitting with Isaac on the rocking chair this afternoon when the pulse oximeter beeped and immediately I started thinking of how I could reach it. Then it dawned on me! I could stand up and walk over to it and silence it! In fact, I could do whatever I wanted at that instant because Isaac was not connected to the vent! He had his HME on and was comfortably sitting in different positions on my lap as if treating it as his own personal chair. I started talking to my nurse about how much things have changed over the past few months. I used to not even be able to get out of Isaac’s room except to take an abbreviated shower or cook something in the kitchen that is connected to his room. I used to not be able to stay even out in the living room to take a breather and just do something for myself. Isaac used to be so unstable that it was a big problem if we did not have nursing each shift! I could go on and on as I am sure the list is long. But times have changed and God has shown that he is merciful to those that seek Him. Isaac is now off his vent for 2 hours twice a day. He has also tolerated his PMV(Passy Muir Valve). A PMV is a valve that attaches to the end of his trache when he is off the vent and helps him express his voice. He was able to tolerate it for 15-20 min at the beginning but suddenly he was able to do 2 hours on it with no problem at all! The nurses and I keep track of how much time he is off the vent when he is wearing the HME or the PMV. I know the goal is for him to be off the vent in the day time then only on the vent for naps and sleeping time, off vent at night, and then we will be on our way towards decannulation! When I put things into perspective this way I am in awe of the magnitude of blessings that we have received from God! This boy who was born at 1 pound and 4 ounces and now weighs 25 pounds and is almost 2 feet tall already! Nothing would have been possible without God’s grace and compassion.

Right now, all his therapists are happy with his progress but of course like the perfectionist they all are they are still not happy unless they are bringing him to the next level. Speech is working on his oral motor and feeding, OT is working on play skills and PT is focused on creating a mini American Ninja out of him! Just kidding! She is focused on making him stand on his own and be able to walk with little assistance. Of course there are so many exercises in between those tasks! We are working on getting a gait trainer but we have not had much success. Apparently there should be a year between getting a stander (an equipment for bearing weight) and a gait trainer (medical walker). Which of course makes no sense to us because he is ready to use one right now! I don’t know why they denied the request just on the basis that it has not been a year. He needs it now! I do not want to delay his progress. If its something that can be bought at Toys R Us we would have bought it already. I really do not need to see another piece of medical equipment in my house to remind me that my son has special needs, but this is something he needs. His walker right now is so short for him and cannot be raised anymore. Anyway, we were granted a Fair Hearing to appeal our request and hopefully they will listen to what his physical therapist and I have to say.

August 19, 2016

Isaac is now sprinting off the ventilator! We started with 30 minutes twice a day and we are now at 60-90 minutes twice a day as tolerated of course!

He is enjoying his freedom to twist and tumble on the mat during his off vent times and really seems to adjust pretty well. We will continue to make strides this year and if everything goes according to God’s plan we should be off vent during the day before his birthday at least!

Thank you to everyone who continues to pray for us!

August 1, 2016

My goodness, has it been more than a month since I last posted? I am so sorry for not updating everyone. Isaac got sick in July and of course when he is sick I get a one track mind and I just focus on him. He had to have steroids and he was really sick this time. We avoided the hospital and we were able to treat it at home but it required round the clock supervision and vigilance. I am happy to report that he is back to his usual shenanigans and is always getting in trouble!

We have an appointment this coming Wednesday at the High Risk clinic and at his ENT doctor. They are planning to take him off the vent for an hour and see how he does with it. I am really nervous about it but I know that God is in control. His pressure support is still at 4 but his PEEP is now 6. He has been on those settings for a while since before he got sick.

Right now we are having problems sleeping through the night. I am hoping that it is just a phase and he will settle down eventually. Meanwhile, he has been partying with his night nurses and I try to keep out of it. I started getting him out of bed and rocking him to sleep but it takes the same amount of time to put him to sleep. After talking to my nurses we agreed to keep things the same, which is same time to bed and same time to wake up. Hopefully, he will go back to sleeping throughout the night.

If you are reading this post please say a short prayer for Isaac that he may start sprinting off his ventilator. Thank you in advance!

June 22, 2016

We are closer to sprinting! Isaac is now on pressure support of 4 and PEEP of 7! Just looking back when we got home a little more than a year ago his settings were so high. God is great! He has surrounded me with awesome nurses and loyal friends.

These were his settings when we came home on February 23, 2015.

Breath rate of 25; Tidal volume 120; Pressure Support 20; PEEP of 8

It was a slow and steady process but I would rather have a turtle than a hare!
We are fast approaching the stage where Isaac needs to be closely supervised. Oh, we are already there! My mistake! In fact, he took a tumble out of his walker the other day and both his nurses scrambled to pick him up! It was reporting time and his day nurse just got done reporting to the night shift. He did not get hurt and was even laughing! As of this moment he is banned from the walker and is only allowed to be in there during Occupational therapy and speech therapy.

June 14, 2016

I just wrote a new article about coming home. If you are reading this post please check it out. I have also updated the gallery with more pictures. Happy reading!!!

June 13, 2016

Isaac is doing well! We went for his echo last week of May and a weight check at the High-Risk clinic. We have not heard the results of his echo yet but we found out that he gained 4 pounds! No wonder those cheeks look like they have their own zip code! Anyway, now I know that I am not getting weaker because he is definitely getting heavier. They have made adjustments to his feedings and it was working. Woohoo! They also made changes on his vent settings. They went down on his pressure support from 8 to 6 and they also went down on his PEEP from 8 to 7. He did not like the two fold change and he definitely showed us with retractions and needing more oxygen. They went back up on his PEEP and his NP gave him almost 2 weeks to get it together before she weaned his PEEP. He did great and he is satting like he has never satted before if that makes sense:) So now he is on pressure support of 6 and PEEP of 7! The doctor wants those numbers to total 10 before he starts sprinting off the vent. We are so excited at home and so are his nurses. They are predicting that he will be more active and will be all over the house given the freedom from the vent. They are probably right!

May 26,2016

I know it’s been a while since I posted. The last time I wrote something here, Isaac was sick with a cold. Well, the boy got a repeat of the same thing last week! We finally had to give antibiotics even though there was no color in his secretions. The bad thing about it is that it gave him diarrhea. We are switching antibiotics and giving him probiotics at the same time. He looks better today and we actually have not suctioned his nose today. Oh how he loves having his nose suctioned! Not! We are going for an echo next week and a weight check with his pulmonologist. Hopefully, the echo will show that we do not have to worry about his pulmonary hypertension any longer. He has been off his meds for a long time now and his Pro-bnp has shown great improvements.

On a different note, this week seems to be a week to go down memory lane. He has been making a lot of headway in all his therapies and each therapist has been reminiscing about how he was when they first met him. His PT mentioned how happy we were when he could sit for 3 seconds! Now we are talking about going more than 7 minutes! This past Thursday during physical therapy he sat for 10 min assisted for endurance and then sat unassisted immediately after for 7+ minutes. He doubled his record from the previous week! That was a really good day! We are making plans on getting a gait trainer and hopefully this will help him get the confidence to walk. We have also been giving him tub baths. We do it on the mat in the bedroom so he can still watch his show and provide a distraction. Each bath session is an improvement on the past one so we are getting somewhere:) The only thing I hate is the fact that it is harder to do trache care when he has had a tub bath because the trache ties are wet and I have to make sure that I dry his neck well. Its hard enough to do without him throwing his wiggle worm antics into the mix:( Anyway, he will like the tub baths more and I will have to get better with the trache care…

April 29, 2016

Isaac went to his ENT doctor this week. We asked about a PMV (Passy Muir Valve) and he advised that he did not want Isaac to use it when he is on the vent because he is on CPAP. It will cause air trapping. I also asked him about the practice of drilling a hole on the PMV and he said he does not want to risk a child’s airway. The way he sees it we only have 90 seconds before a child’s airway becomes at risk. I respected his advice and went ahead and informed my pulmonologist office about his recommendation.

Isaac seems to like being on CPAP. I guess it’s because the vent is not telling him how to breathe and when to breathe. They have been steadily going down on his pressure support and he has been tolerating it until he got sick two weeks ago. I had to cancel his therapies this week so he could rest fully. He is well enough now to resume his therapies for this week and probably to wean on his pressure support again. Feeding wise, he is also gaining weight (I know just from holding him) because we transitioned from continuous all day to bolus feeds during the day and continuous at night. We have been able to give him more calories that way and the timing of the feedings during the day also suit the different therapy schedules.

April 29, 2016

Did you know that there are two kinds of lawnmowers? One that is manual (you have to push it) and the other kind which is self-propelled. I promise this isn’t a text that was mistakenly posted here:)
Last sunday, when I woke up I felt something was not right with my soul.I felt a sort of resentment at my lot in life, to make it short. I felt like a hamster just running through the wheel in his cage. In times like these I try to find refuge in the Word of God. I record the In Touch Series by Pastor Charles Stanley and I was scrolling through the different dates wondering which one I should watch. I picked one at random and came upon a message about restlessness. My feelings that day finally had a name! I offered a quick thanks! During the message Dr. Stanley mentioned that whenever we feel restless we should listen to what God wants us to do. He also said that God’s voice would be like a whisper and that we should listen in earnest. After the message I prayed that God would tell me what to do during that moment. I told Him that I would be waiting for his answer. He answered immediately. He said, “focus on your son and everything else will follow”. I had my answer. At that moment I felt renewed and ready to take on anything and everything!
What was the connection to the lawn mower? Well, I think the Word of God is like a self propelled lawn mower. You do not need to push it. It will push itself in your life as long as you remain open and listen to what he has to say. Blessings to everyone!

April 24, 2016

Wow! Has it been more than two weeks since I posted? Life happens…what can I say? Anyway, Isaac continues to progress on weaning the settings on his ventilator. We are now on pressure support of 12 and PEEP of 8! The magic number I believe is pressure support of 6 and PEEP of 6! We have a slight obstacle though. Isaac got sick this week. It’s a minor cold and a little cough and fortunately no fever. It is not enough to put him down though. He still kept his therapy appointments and went on his stander, bouncer and walker. We just watch him like a hawk especially during sleeping time. We had increased secretions and his nose has been very runny. Suctioning his nose is the hardest part of what we have to do. He does not like it. But then, I do not know any kid who likes it!

All of this has been compounded by the fact that I am sick myself probably of the same thing! So I have to wear a mask whenever I am close to him. For a moment there when he saw me wearing a mask he stared and looked like he did not recognize me. When I held him for his afternoon nap he kept pulling my mask and then letting go so that it would snap back to my face. Really naughty!

April 5, 2016

We just came home from the doctor for Isaac’s well baby check up. And drum roll please…. He is now on CPAP! Yay!!!

So, CPAP is when the vent does not give him any breaths at all but instead just gives him support in every breath that he takes. The doctor is very happy with him respiratory wise because he looks great! On the other hand, he wasn’t very happy with his weight. He needs to gain more weight and he wants to see him more often.

During the consultation, the doctor took him off the vent for 5 minutes and he looked fine and his oxygen saturation was great. Three minutes off the vent though he started retracting even though he showed no other signs of respiratory distress and the sats remained within the parameters. The doctor explained that he started retracting because he was not getting pressure support from the ventilator, in short his pressure support went from 16 to 0! Of course he was going to retract!

The plan is to gradually wean his pressure support and peep. When it gets to the right magic number then they will start taking him off the ventilator gradually starting with maybe 5 minutes twice a day then increasing it as he tolerates it.

The goal is to have him off the ventilator before the next winter starts. Hopefully with God’s grace and blessings Isaac will get to where he does not need the vent anymore.

The first time he gets off the ventilator I am bringing him upstairs in my bedroom and on our bed so he can crawl all over it😜Lol!

A couple of his nurses had some wishes for his birthday. I want to acknowledge those words here. I believe that the more people that are praying and believing in Isaac, the faster he will be weaned off the vent!

“Happy birthday to my buddy! God bless you and protect you buddy, by this time next year you will be walking without a vent in Jesus name. Amen!”

“May you continue to grow as Jesus grew in wisdom, knowledge and understanding of God. Your generation will be impacted by your wisdom. No evil shall befall you and no plague come near your dwelling. Your health shall blossom and be perfected by God. Victory for you on every side. Many happy returns to you as you add another year today. Happy birthday to you Boss!”

I am really thankful for nurses and friends who understand and empathize with what our family is going through right now. We have been blessed tremendously! God is great!

April 3, 2014

“My cup runneth over!” Today is Isaac’s 2nd birthday! My friends all remembered to greet him and even people whom I never expected to remember his birthday remembered it. I have a great group of friends who have been very supportive throughout this journey. I have some messages that were sent by a couple of his nurses too. I will share them here tomorrow. I have been meaning to post them earlier but there just wasn’t enough time. I just wanted to post on the day of his birthday even if it’s a few minutes off!

It was a happy day even though it was a little hectic😃 More posts and pictures tomorrow!

March 18, 2016

Isaac was on Preemie World. I will place the link here so that y’all can check it out. Anyway, things are looking great. The flu season is over and no more Synagis shots. Yay!!! Isaac was part of a study at the doctors office where they have to receive Azithromycin in small doses in the hope to prevent them from getting really sick during the flu season. I still don’t know if Isaac got the placebo or the real thing. My nurses of course all have their own opinions. One tasted it by accident when she was withdrawing it for administration and she said that it tasted like medicine. Don’t know how far the trial people will go to make it look real though. They probably know parents will try it. Isaac is still going through challenges with feeding but we will keep trying of course. Physical therapy is happy with how he is performing MOST of the time (if you get my meaning). Attitude and behavior plays a big role with this little guy. He has everything figured out, it seems. Occupational therapy found out he is more focused when he is working with her when he is on the stander. So we can actually hit two birds with one stone when we put him in the stander during OT. Speech is coming along fine as he learns more vocabulary by pointing to pictures. I think I am going to look for some of my flash cards during my teaching days. Wow! That seems like ages ago!!! It’s time to break out the teacher stuff. I have a new nurse for every other Sunday. She seems like a good one. I hope she can be my back up when one of my regular nurses go on vacation or call in.

I am working on adding a page for Isaac’s pictures but I am having technical difficulties. Here is the link to the article I wrote about Isaac on Preemie World.http://preemie.us/PreemieIsaacNathaniel

IMG_6200 IMG_6250 IMG_6254 IMG_6328 IMG_6331 IMG_6341 IMG_6343 IMG_6347 IMG_6350 IMG_6363 IMG_6369

 

March 5, 2016

Really, two posts in a day? Well, one of my nurses just quoted the scripture to me tonight and I thought it was very appropriate with what my family was going through right now.

“To everything there is a season, and a time to every purpose under the heaven; A time to be born and a time to die; A time to plant, and a time to pluck up that which is planted.” Ecclesiastes 3:1-2

My season to plant is right now. Now is the time to put everything that I have and everything in my power and focus it on my son. Now is the time that he needs me the most, not later. My nurse even gave me another example of this. A day is composed of the morning, afternoon and evening. what we do in the morning, we cannot do at night because we do not have the energy to do it. There are things you do in the morning, in the afternoon,  and at night. And that is just how it is supposed to be. I have the energy and time to spend with my son now because I am not working. My husband has the energy now to work extra so I can spend time with my son at home. Without both of us knowing our place and our role in my son’s life, we would have been lost.

I thank God for this little piece of wisdom tonight. God bless everyone!

 

March 5, 2016

Isaac has been feeling better the past few days. He kept all his therapies this week so we are in great shape to take on another week. I am looking forward to any changes and orders from his pulmonologist. When we hit our first year after discharge I neglected to post the difference in the settings on his vent. He has come a long way from that first day home. When we came home he was on these vent settings:

Breath Rate of 25; Tidal Volume of 120; I Time of 0.4; Pressure Support of 20; 1.5 L of oxygen

Now, he is …

Breath Rate of 9; Tidal Volume of 70; I Time of 0.4; Pressure Support of 16; Room air only

We had to put him back on the noisy oxygen concentrator when he got sick. I was trying to avoid it because I already got used to the absence of it’s noise. But it was something he needed. He only needed half a liter and was only on it for 4 days.

There are some things that have changed in the past year. I usually worry about trache care, trache change (this one specially), adding neb treatments and just about any changes. I no longer worry about those now. Well, of course when he is sick that would be another story. Now, these things are just part of being a mom of a trached baby. I still do trache care myself with the nurse because that is how I can see that the stoma looks good and free from infection. I do the trache changes now with my nurse of course. She pulls the old one out and I put the new one in! He’s not a happy camper but he recovers in seconds and continues to watch his show 🙂 My nurses has gotten used to him now so that most mornings I can get some more shut eye and not be awake at 7AM. They come in, get the report from the night nurse and get started with his meds and treatments. When Isaac wakes up he usually watches on his iPad while the nurse charts by his bed until I rouse myself and get started on my part of his care. The day begins with therapy/therapies and I stay in the room for that so that I can see his progress and encourage him at the same time. I still stay in his room most of the day even when he is on his bouncer, stander or walker. We go to the living room sometimes and it helps that he is no longer on oxygen so that we do not have to use the tank anymore. His room is attached to a full bathroom and is connected to the kitchen so I can still cook (my favorite past time) and shuttle in and out of his room. My real down time is in the evening after I tuck him in at night. I must confess I watch too many shows and that’s what keeps me up late. I have been trying to read this book by John Medina Brain Rules for Baby: How to Raise a Smart and Happy Child from 0-5. I read his other one Brain Rules (adults) and loved it. It was an easy read and I learned a lot from it so I figured I would read this one about babies. I have read half of it but I have to go back a few pages every time I pick it up to read because I have forgotten what the topic being discussed was about! But it’s okay, I will eventually finish reading it and will reread it! Such is the life of a busy trache mom:)

 

 

 

February 28,2016

I just suddenly felt the need to share this verse when I was having my quiet time tonight.

Isaiah 53:4-5

” Surely he has borne our sickness, and carried our suffering; yet we considered him plagued, struck by God, and afflicted. But he was pierced for our transgressions. He was crushed for your iniquities. The punishment that brought our peace was on him; and by his wounds we are healed.”

John 14:27

” Peace I leave with you. My peace I give to you; not as the world gives, give I to you. Don’t let yourself be troubled, neither let it be fearful.”

 

 

February 27, 2016

Isaac is sick. I had to cancel all therapies so he could rest and we don’t have to worry about waking him up on time. It’s mostly cough and cold but you never know with BPD babies what’s going to make them go into the hospital. We have just been giving nebulization treatments regularly and making sure he stays hydrated and happy. If I have to hold him all day I will! I don’t think he knows he is sick though. He seems to be more irritated with his cough and cold and sees it as bothersome. He still went on his bouncer, he even had an hour on his stander, and still watched tv upside down even though he would cough because of post nasal drips down his throat. I am glad it is not a full blown sickness like he had a few months back. I have had sleepless nights since Monday but he was mostly okay during the day. Just extra fussy and needy.

 

Isaac with his new shoes! With bedhead too!!!

Isaac with his new shoes! With bedhead too!!!

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The wheels on the bus go round and round!

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Hi I am cute!

 

 

 

 

 

 

 

 

 

 

 

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Is something funny?

 

 

 

 

 

 

 

 

 

 

 

February 25, 2016

I am just posting this now but yay!!!! Happy One Year Anniversary since discharge!!!

God is great all the time! We had just one hospital stay and it wasn’t even a real one, just for observation.

I hope you all will forgive me for posting late. I cooked some foods to celebrate and I have cake but he wouldn’t taste anything!

 

 

February 21, 2016

I am still concerned with Isaac’s feeding progress. The speech therapist and I thought he was making headway when we introduced the rice cereal. He seemed to really like it better than the sweet potatoes and apple sauce. But now he would keep his mouth open as if he doesn’t want the food to touch his tongue! We gave him a break for a week and a half and then we tried to introduce bananas this time. He seemed okay with it but it is still not the reception I had hoped. The speech therapist said it might take a few rounds of introducing different types of food to him before he gets in the habit of taking food by mouth. The doctors did not make any changes this week but we are looking forward to whatever they planned for this coming week. God bless!

February 16, 2016

Isaac is in rare form today! Woke up smiling and clapping his hands. He was the same yesterday. Honestly, who wakes up on a Monday clapping and smiling😄😄😄? He has this new thing about watching everything upside down. I remember my younger brother and especially my younger sister doing that when they were little. He has a harder time doing it when he is on the walker but he is so happy he can do it in his bouncer!!!

 

 

 

On the bouncer watching his nursery rhymes upside down!

On the bouncer watching his nursery rhymes upside down!

 

 

 

 

 

 

 

February 11, 2016

My DME company RT came yesterday to check on Isaac’s vent. I took this opportunity to ask him questions and to voice out my concerns (my last post). He said that it is really all about the settings. First we discussed the PEEP. He said the low pressure cmH2O setting should not be more than two values lower than the actual PEEP. This alarm tells the caregiver whether the child has decannulated. The vent will sense that it is not able to give enough PEEP to the child because it is out and so with a 2 breath delay the vent will alarm!

Next we asked about mucus plugs and will the vent alarm if there is one or will it even detect it? He said then we need to look at the high pressure cmH2O setting and that this number should only be 25 more than the PIP set for the child. He said in the event of a mucus plug the action of the machine is to increase the pressure so that the air from the vent could get in. If the air cannot get in and the pressure increases to what has been set then after a two breath delay the vent will alarm!

I know that some of these things are more complicated and I am trying to dumb it down enough so I can understand it😁 We are not respiratory therapists and doctors but we should understand enough to know how to protect our children. Its so overwhelming, I know but just like one mom mentioned on a post I just read, ” there is joy in all the stress”.

February 8, 2016

I have joined this Facebook group called Moms of Trache Babies. You can only join if you are the caregiver of a trached baby. I really don’t do Facebook and only joined because of this group. It is a very supportive group and I have learned a lot from the posts of veteran as well as new parents on the site. One thing that I have read recently was the concern about vents not alarming when the kiddos get decannulated. Some of our trachies are wild sleepers especially when they are advancing into the toddler age and some of them decannulate themselves in their sleep as well. Some of the moms posted that the LTV which is one of the most common home vents do not alarm when the baby gets decannulated. It really freaked me out. I told my nurses to make sure they are listening for gusting sounds (that is the sound I hear for a couple of seconds when I take the trache out when we change it) and to make sure not to ignore desaturations. They need to make sure they eyeball the site and see that the trache is in place.

I asked one of my older nurses if she has experienced something like this and she said that she had a patient once whose parents wanted their child to sleep in a dark quiet room so that the child cannot disturbed. The child also liked sleeping prone! What bothered her about it was that it was too dark almost to the point of it being not safe. We need to balance the comfort with safety always! Kids will get used to it. We want a normal life for our children but they need to be alive to experience that normal life that we want to give! Anyway, she said she heard gusting sounds and she looked and felt her way to the trache site and lifted the trache off the baby’s chest where it was resting. Apparently, the reason why it was not alarming was because it was resting against her skin so it was occluded and the vent did not sense a disconnect. She hurriedly turned the baby over and tried to put the trache in! She had to wrestle with her because the baby kept trying to flip back. By this time she had yelled for the parents and they turned the light on and she of course had placed the trache back in. The experience was a lesson for her as well as the parents. She said that’s the reason why in training they always tell the nurses that they need to see the patient at all times. These things happen in only a few seconds and you also have only a few seconds to react. My nurse also mentioned that when she takes one of her patients off the vent and places a glove over it to protect the circuit from contamination, the vent does not alarm either. It does not sense anything because physically it is blowing into a closed space much like the lungs.

My day nurse and I tried it today when we were bagging my son one of his meds. We disconnected the tubing from the omniflex so we could pass the tubing from between the bars of the bed and then reconnect. While I was bagging, I told my nurse to cover the mouth of the circuit with her hand and then reset the alarm on the vent (it gives/shows a disconnect message when we disconnect). The vent stopped showing a disconnect message and there was no alarm, not even a low pressure one when she covered the mouth of the circuit with the palm of her hand. Wow! That was an eye opener for her as well.

While we were talking about what transpired this morning we also realized that if Isaac had a mucus plug the vent would not alarm either. That is where the pulse oximeter comes in and how important that it gives us an accurate reading. In the absence of it or even in the presence of it, I always look at my son’s face and work of breathing. The machine is not perfect but my son is! He will show me if he is having a hard time breathing. Mucus plugs are one of the biggest problems respiratory kids face. Nebulizing regularly with saline and changing the trache every month or even more often when there is an infection and more secretions help in preventing a plug from happening.

So what did I get from this little scenario?

  1. I told my nurses to never ignore the desaturations at anytime.
  2. Look at the trache site especially at night when Isaac is tossing and turning a lot in his sleep.
  3. “Put their eyes” on the trache site to make sure the trache is in.
  4. Do not trust just the equipment. Look at Isaac and listen.
  5. I told them the two scenarios. One experienced by one of my night nurses and the other one by us and the conclusions we got from it. I try to make the nurses feel like they are a stakeholder in Isaac’s development because I believe they truly are. They come and see him 24hrs a day and they need to be invested in his good health and well being.

 

 

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Isaac with his favorite nurse!

 

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Do whatever you want, I am busy watching my show…

 

 

 

 

 

 

 

 

 

February 7, 2016

No nurse today! My night nurse helped me give the morning meds before she left. Thank God for terrific nurses!

 

February 6, 2016

It’s just a lazy day today. Isaac woke up around 6:00AM and my nurse was suctioning him. She got a couple of thick mucus so we decided to give him a PRN breathing treatment of albuterol. It actually helped him go back to sleep probably because he was wheezing as well. I went back to bed on the cot in his room and watched the pulse oximeter as the O2 saturation started climbing to his usual rate. I told his night nurse to report the PRN neb to the day nurse so she can delay the regular morning treatment of albuterol and also so he can sleep a little longer. We cherish the days he does not have therapy because then he can sleep anytime he wants and just be lazy. We still put him on the stander since that is an “order” from his drill sergeant (his PT:) ). The stander has been so beneficial to him because it helps him bear weight and helps with standing. Feeding wise, we have decided to take a break from the rice cereal since he gagged and coughed last time. We did not do feeding yesterday and no feeding for next week either. I hope he tries to eat again after the break. I bought kids bowls, plates and spoons because I got so excited! Anyway, we really can’t force him. He will have to just do this in his own time. He will stand, walk, talk and eat in his own time.

This is red!

This is red!

 

Hi!

Hi!

 

 

 

 

 

 

 

 

 

 

 

Tummy time!

Tummy time!

 

 

 

 

February 1, 2016

This is before he throws away all the toys in front of him. When that happens he just plays with his fingers😄

This is before he throws away all the toys in front of him. When that happens he just plays with his fingers😄

Shenanigator- A person who instigates shenanigans! Picture of the shenanigator right here!

 

 

 

 

 

 

January 29, 2016

Trache change… check! My day nurse and I changed Isaac’s trache today. It was quick but of course he got mad because he probably thought it was only trache care😉 My day nurse was on the other side of the bed and was also gloved so that she could distract him and put the step down trache if needed. I am always nervous when it is trache change time. I have been doing this for almost a year since he got trached and you would think it should be easy by now. I have gotten better though. I used to get my nurse nervous because I was so anxious! Looking back at it now, I think it’s hilarious!

January 27, 2016

You know you watch too much cartoons/nursery rhymes with your child when your topic of conversation with his nurse is your opinion about the change in cast members of the Mother Goose Club (it’s an online website that shows nursery rhymes) 😁😛😁

There are some days when I just feel so tired. It’s part of being a woman (if you know what I mean😉). Today, I was discussing with Isaac’s nurse the fact that some of the original members of the Mother Goose Club has been replaced! After we talked about it for some time we both said, ” What is the world coming to when an adult conversation is about Mother Goose Club! My son and I watch this show everyday and even a couple of times a day. He really enjoys it and it is educational. He enjoys interacting with the real kids on the show and of course I watch it with him so I can sing and recite the rhymes with him. I very rarely watch anything else on TV during the daytime and evening until Isaac is asleep. I really should start sleeping early. Otherwise, Isaac is ready to face the day while I struggle to keep up!

 

January 24, 2016

It’s been a while since I posted. Not that there hasn’t been any changes or updates but because I have been busy with another section of the blog which is the FAQS page. I had recently emailed one of the founders of the site http://www.inspire.com so that she could maybe take a look at my blog and make suggestions with regards to other articles I might write to help parents in similar circumstances. She suggested that I could maybe add a FAQS page since a lot of parents have so many questions about bringing home a baby on a vent or g-tube. So if you are one of those parents who are close to coming home, or just came home the FAQS page is for you! If you do have a question of your own that I have not addressed on the page yet please throw me an email at clalunio@gmail.com so I can add and answer it. Remember, there are no silly questions, all questions are important!

Now with Isaac…

Our boy has been eating rice cereal mixed with milk and with water. I think he likes the one mixed with water the best. He did really good when the speech therapist fed him. No gagging! which was surprising because she also did some oral exercises inside his mouth. He really is coming along just fine. We just need to figure out what food he likes to eat and what his tastes are:)

Here are some current pictures:)

This is a jack-in-the-box cookie jar and he loves this toy!

This is a jack-in-the-box cookie jar and he loves this toy!

Typical male fashion, he has learned to pick his nose! Is it the second knuckle in there, pal?

Typical male fashion, he has learned to pick his nose! Is it the second knuckle in there, pal?

 

Yummy, yummy in my tummy!

Yummy, yummy in my tummy!

 

January 9, 2016

Are you my friend?

Are you my friend?

He had a weird night last night! He decided to wake up at midnight just when I was about ready to go to sleep. He was awake from 12MN to 2AM! He went back to sleep and then was awake and ready to meet the world at 7AM. This boy has no mercy! Thank God for nurses that let me sleep for a few more minutes while they do all their morning care and meds:) And thank God that Isaac is cooperating and did not have any immediate respiratory needs! He was watching Mother Goose Clubhouse today and for some reason, those things that he did not think were funny before is so hilarious now! He likes the nursery rhymes with cartoons but he likes the one with the actual children better. He acts like he is talking with them. His lips even move sometimes and I swear he said  “hey!” one time. We are still working on his feeding which is something that is the most challenging right now because he is so sensitive with anything inside his mouth. We are trying to get him used to apple sauce and sweet potato but he has other ideas! Maybe I should just try and feed him “adobo” (it’s a dish from my country)!

He likes being in his walker now because he can get into trouble the minute you turn your head. His circuit is only a little more than two feet long and we always need to be ready to move the vent with him when he decides to sprint:) It’s so funny because he tries to move when he is in his bouncer so it seems like he is going to flip over in his bouncer and fall head first on the floor! His favorite toy right now is Scout because for some reason he would put his forehead against Scout whenever he hears him talk.

I'm the King of the world!

I’m the King of the world!!!

Mom, why do you have to be in my selfie?

Mom, why do you have to be in my selfie?

 

 

 

 

 

 

 

 

 

 

January 6, 2016

Is that a shy smile?

Is that a shy smile?

We are still on room air! The doctor wants him to stay on it for the rest of the week and not make any changes. He usually needs oxygen when he can’t cough up his mucus, which isn’t very often. the nurse practitioner is okay with us giving him oxygen when he needs it but she wants it only for a few minutes (if he agrees, of course!). Right now, I really need another activity for Isaac since he is such a wiggle worm. The OT said that he has the need for gross motor movements right now. Which isn’t such a surprise with the developmental strides he has been having. Okay, till tomorrow!

January 5, 2016

Two posts in one day! Yay! Well, I did not want to insert anything else but my prayer in my other post. Isaac’s physical therapist today was very happy because he is building stamina in terms of standing with assistance. That stander and walker is really doing its job! Here are some pics:

This was taken today. Look at his stance! Such a big boy!

This was taken today. Look at his stance! Such a big boy!

This is just because he is so cute!

This is just because he is so cute!

This was taken November 3, 2015 with his drill sergeant!

This was taken November 3, 2015 with his drill sergeant!

 

 

 

 

 

 

 

 

 

January 5, 2016

I was mulling over my New Year’s Eve prayer when I was holding Isaac during his nap time. I thought I really bombed it! I was never able to say what I was thankful for for the past year and how I looked forward to the coming year. I did not get a chance to collect my thoughts. Everyone was hungry! Anyway, there is still a chance to write them down. It’s never too late to acknowledge what God has done in our lives. Isaac had just fallen asleep and I can start writing as soon as I put him back to bed. So here is my prayer:

“The things which are impossible with men are possible with God, Luke 18:27. These are words we lived by everyday in the past year and will continue to live by this coming year. We have received great blessings as well as great challenges. We are grateful for both. The blessings because we see God’s desire to shower us with his love and the challenges because God wants us to know that we can overcome it by being faithful and to call upon His name. I feel especially grateful and blessed that Isaac has come into our lives and changed it! When I gaze at Isaac in his sleep I feel the luckiest Mom alive to have such a precious little boy! God gave him to us so that our lives can finally make sense! When he is awake (and he might in the next 30 min.!) it is so fulfilling to see the twinkle in his eyes when he sees and hears a favorite nursery rhyme. These things are minute in the great scheme of things but I am grateful for it. I will probably repeat the word “grateful” a couple more times but that’s because I am! I thank God for nurses that love my son, I thank God for  supplies that come on time, I thank the heavens for sunlight that streams through the windows on a sunny day! I thank God everyday for pajamas I can wear all day because I have nowhere to go but be with my son. I thank God for a hardworking husband who has learned how to shop for groceries and does laundry and housework on his off days. I am eternally grateful for friends who prefer to do our get togethers at my house because they know I cannot leave Isaac yet. And finally I am grateful for family who have always stood by me since the beginning of it all: my sister, my brother, my mom and everyone on my husband’s side of the family that took the time to ask about Isaac even in their busy lives. Almighty Father in heaven, my cup runneth over! I know that the new year will continually bring more blessings and challenges for us but I know that God is and will always be in control. Amen”

 

January 2, 2016

WOW! I had to go back and fix my calendar year there for a minute:) I am so used to typing 2015. Anyway, with the holidays come the difficult part of having a baby on a vent. Finding nursing staff to work on holidays is hard and finding one that is good is even more difficult. My nurse last night worked in the hospital and does home health as a part time job. When I asked her why she decided to do part time work in home health she said she was curious to find out what was happening at home when parents bring their kids back to the hospital. I thought that that was a great perspective to have. If I had spoken to a home health nurse when we were in the hospital I probably would have decided to trache Isaac sooner. There’s just so many details in coming home that it becomes so overwhelming to parents. It’s the great unknown, really. We talked about how it would be great for hospital nurses to do home health and for home health nurses to work in the hospital as well. It would be a great help to parents who are on the way of bringing their baby home from the hospital. It will also prepare them for situations that may happen and things to look out for. While mulling over what I was going to write about tonight, I thought that it would be great to start a list of things to be on the lookout for or things that we can do to make sure our babies stay home. This is just my list, okay? It is based on Isaac’s condition and his set up at home. Each of us have a different situation of course. But my hope is that everyone who reads my blog will at least get something valuable from it. So check out the “List” page! I might change the title of that page later though.

 

December 31, 2015

Okay, we had to go back to the concentrator yesterday  afternoon because of increased secretions. But he is back on room air again this evening! Hopefully he will be able to tolerate it more this time.

Mom, you think we took enough selfies?

Mom, you think we took enough selfies?

December 29, 2015

It is night time now and Isaac is still on room air. My nurse practitioner told me that it is easier to keep the sats high during rest or sleep. When he was on the bouncer earlier he was acting like he wanted to escape it:) but he was still sitting great! Thank God for all the blessings! No matter how much we do if it is not God’s way it will not happen. We will keep on doing what we are doing which is being vigilant so that he does not get sick this season.

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He only has enough attention span to open and appreciate one toy right now. So we are taking it easy and just open one a day!

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This is the medical kit.

 

 

 

 

 

 

 

 

December 29, 2015

Boop! ET phone home!

Boop! ET phone home!

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We thought it would be cool to take a picture with his Mickey Mouse glasses with his Mickey Mouse gift! He had other ideas!

 

 

 

 

 

 

 

 

We are on room air since 10AM! Woo-Hoo!!! Hope he keeps it up. The noise the concentrator makes is something I won’t miss:)

Yesterday he munched on some potato chips and he did not gag! When I say munch it means food particles just went in his mouth and probably got some crumbs in:) The day  before that he swiped a cookie from me and put it in his mouth and I heard it hit his teeth. He did not gag either and did not act like he was being fed poison!

December 27, 2015

I want to get this year over with! It seems to have dragged on forever! Upon reflection, it has been a good year for Isaac. It was the year we switched to his home vent and eventually came home and it is also the year of his first birthday. I don’t know about you, but it seems to me that if we move forward to 2016 then there will be more new and exciting changes in store for us as a family but also for Isaac specifically.

Two weeks ago Isaac got his stander. At last! And a week before that he has been scooting around in his walker (that is his new favorite station right now). His physical therapist of course has cautioned that the walker will not teach him to walk and neither does the stander. Each has its own advantages and using it appropriately is important.

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First time on the stander… 10 minutes!

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Playing on the stander

 

 

 

 

 

 

 

 

 

His physical therapist (a.k.a. Drill Sergeant!) has recommended placing him on the stander twice a day. Today is the first day that he was able to stay on it for 30 min. It’s an improvement from 20:) He has been loving his walker as well because it allows him to explore his room and get into trouble of course!

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Munching on his toys in the walker

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Reading a book Rainbow Friends in the walker

 

 

 

 

 

 

 

Thursday, December 3, 2015

It’s hard to believe that it’s already December and Christmas is just around the corner. I have not put up my tree yet. Been so absorbed making sure Isaac doesn’t get sick. The nurses and I have decided we will not skip any treatments even though his lung sounds are good. I hardly got any sleep last night because I had to wake up to him coughing and being suctioned by his night nurse. We got  thick mucus! This despite the fact that we gave saline and half of an albuterol at 2AM. Anyway, everyone in the house is sick and I have banned all of them from his room. I also put out hand sanitizers outside in the living room so they can help themselves:) Physical therapy, occupational therapy and speech therapy still came and did their sessions. I seldom cancel those appointments because I know they are so good for him. Anyway, here are some pictures of Isaac. Enjoy!

 

Sunday, November 20, 2015

Today was a great day! Isaac had no respiratory problems and most importantly he pooped twice! For any moms out there we know how important it is for our babies to poop:)

We were going to change the trache today but I will postpone it until next week. I am not sure when supplies are coming in December because of the holidays. Its better not to change it too early.

Friday, November 6,2015

Isaac just had two therapies today. His physical therapist came at 8:45AM and then his speech therapist came at 10:30AM. He had an hour rest in between so he enjoyed what both therapists had to offer. Of course, there are some aspects of it that he doesn’t like:) All in all it was a great morning! He woke up at 7:30 and he just went down for his midmorning nap. Yesterday, Thursday, was circuit change day but because another nurse was here to get her orientation we missed it. So we are going to have to do it today. We change the vent circuits every week and the heater is changed every two weeks. I am planning to record a video about changing the vent circuits so wait for it to be posted soon!