Thought I’d Share .. I was just looking at Riley’s monitor while he’s sleeping .. pulse ox 95%-97% on room air. Last year at this time that monitor would have read between 68%-70% on 4L of Oxygen. Never really could imagine this day .. Riley has never had a pulse ox that read above the 80’s .. Since birth. Seeing his monitor right now is proof .. Miracles Can Happen .. ♡♥
Riley seems to be doing Great Decannulated and will be discharged on Thursday! Yay! Even with Riley doing so Great he actually does have lung disease .. which we knew since we were inpatient after Transplant. That being said when Riley sleeps his pulse ox likes to drift into the 80’s. Mind you before transplant Riley sat around 70% at rest on 4L of O2. When he had the trach he slept on 1/4L of O2 feed through his T Piece. We had many conversations about after the trach came out he may need to wear a nasal cannula to sleep. Always referencing to before transplant when he wore it all the time and that now it would just be at night. He always seemed Ok with the idea. So last night they didn’t want to put him to bed with the cannula. They wanted to see where his PO would sit. Of course it went into the 80’s. Well once Riley goes to sleep your not getting them on. Not with his PTSD. So last night we used blow by .. for what it was worth. Tonight … I said we needed to put the cannula on before he goes to sleep. I had talked with Riley about it throughout the day in preparation. As bedtime neared I put the cannula on him. At first he was saying it hurt .. which it doesn’t but then his little lips curved down and the tears began. It took everything I had not to cry with him in the moment. We never imagined wearing the O2 after Transplant and haven’t seen him with a nasal cannula since he was wheeled away for Transplant in March. I just tried to reassure him that as soon as he wakes up he can take it off. That it’s not like before .. It’s just when he sleeps. He finally calmed down and feel asleep with Dad.
I try not to make any promises in regards to the future. I know they have some concern that his PO will begin to drop when he’s really active .. running .. playing. He did fine with the 6 minute walk today that actually took place after we had already walked the 6th and 7th floors. They do want us to check him though to keep an eye on his O2 when he his active.
We have learned while on this Journey with Riley that we have to Live for Today .. for the Moment and Today is a Good Day! Riley gets to go Home Thursday and begin His count down to Make a Wish .. ♡♥
Thought I’d Share …
Since I was 5 Months pregnant Dr Spray said that the child I was carrying would ultimately need a Heart/Lung Transplant if he was going to make it to 5 years old. After being listed almost 3 and a half years .. Riley received his Gift of Life one month before his 5th Birthday!
I think after Waiting Soo long and having 3 Dry Runs along the way .. I’m still kinda in Shock! I can’t believe I have a child that had a Heart/Lung Transplant! It’s just Mind Boggling sometimes .. All of It .. The post transplant stay at CHOP .. The Paraflu .. Renal Failure .. Adenovirus .. Rhinovirus .. Pseudomonas .. Thal Fundoplication .. Tracheostomy .. 17 plus daily meds .. Nursing .. living in the apartment .. Make a Wish etc.
Know though .. I would do it All again to give my Riley a chance at Life .. ♡♥
It is Official .. Riley is ready for Decannulation!!! The only problem is what I previously mentioned and that is CHOP is a full house. The plan is to Decannulate by the end of October. ENT is working on the insurance and scheduling for admission into either the PICU or PCU. (We would Love to go to the PCU since Riley lived there May through July, but there’s only 2 private rooms.) There is always the hope that something will open up sooner, but 2 weeks should fly by!
As you just read ENT is very pleased with how Riley looks and Dr Kreindler in Pulmonary even more so! He had the nurse pull up Riley’s growth chart and he was thrilled .. literally saying .. “Yes .. Yes .. That is Beautiful!” Since birth Riley has barely even been on the growth chart and now he is climbing right up it. I think just having Riley walking all over and chatting up a storm blows their minds. Not only did Riley throw up all day every day before transplant .. Especially if he had to walk even a short distance, but with the complications he faced after Transplant .. There were many weeks not knowing if Riley would have made it to today. To be able to walk in that office talking up a storm and being ready to Decannulate is a Miracle in itself!
The concern of the yeast from the Bronchoscopy has decreased so we can lower Riley’s Nystatin back down to his original dosage and frequency. Another Yay moment!
Now we just have to try and prep Riley for being inpatient again. He is So ready to ‘throw his trach in the Trash’ but I think Monday was the first time he really understood that meant we were going to be staying/sleeping at the hospital. He very quickly began to get upset and cry about having to ‘Stay’ in the hospital. Riley and his nurse Alisha (Momma Alisha) have a special bond. That being said Riley has a different level of trust with her that we’re going to utilize to prepare for his Decannulation stay. Maybe a little time for Riley to mentally prepare won’t be so bad.
Thank you All for being on this Journey with Us! At 7 Months Post Heart/Lung Transplant Riley is Continuing to Beat the Odds as he Journeys On … ♡♥
Crossing Fingers and Even Toes … Monday Riley has what should be he Last visit with Dr Javia before Decannulation! Everyone seems to be in agreement that if Riley shows he is still ready for Decannulation Monday then there is no reason to continue to wait! Especially with the Pseudomonas hanging around! I told pulmonary on Friday that we’re ready .. Whether it’s come back Monday night or Tuesday or Wednesday .. we’re there!
There is a little situation where CHOP happens to be a full house right now but hopefully they’ll get Riley in. He doesn’t even have to stay in prime real estate in the CICU .. We would be headed to the PICU.
So as you go about your morning and afternoon Monday maybe keep a little finger crossed that Riley will be getting admitted .. if not Monday one day to follow .. to finally remove his Trach .. ♡♥
On Monday afternoon I spoke to Katie from Riley’s Pulmonary team. It appears that Riley has tested positive for Pseudomonas again. Riley tested positive for Pseudomonas while he was still in the CICU after Transplant. At that time they said that Riley would have
Pseudomonas until they were able to remove the breathing tube. Obviously we ended up traching Riley so technically he still has a breathing tube or artifical airway. The true cure to Riley’s Pseudomonas would be to remove the trach! Hopefully next Monday we will be scheduling to do that by the end of October.
Until then .. because he is testing positive again we need to treat it. Pseudomonas could potentially be fatal so we can’t wait for Decannulation.
We are going to treat Riley’s Pseudomonas with Cipro and a inhalation med Tobramycin or Tobi.
Tobramycin is a pretty powerful drug and very expensive .. around $7,000. That being said we are waiting on a pre authorization from the insurance company and then there is only One pharmacy that our insurance will get the med from. It could end up taking a week to get the medicine which seems to be ok but kinda boggles my mind a little.
So we’ll start the Cipro Tuesday and wait for the Tobi.
Riley will see Dr Javia next Monday and we should be scheduling his PICU stay for Decannulation soon to follow.
Riley is ready to Throw his Trach in the Trash .. Literally and it can take the Pseudomonas with it .. ♡♥
Riley's Mom Blog 
Written
on October 7, 2013