Riley was admitted Monday after his sedated MRI. There was some struggles with getting his IV. Please see Riley’s Instagram or FB page for complete update at Smile4Riley.
In the big picture Tuesday was a pretty good day for Riley.
Riley was again given some options in regards to getting a blood drawing IV. He chose to get labs once daily and finger sticks every 6 hours rather then getting another IV placed. Of course when they came to draw the labs we had to remind him this is what chose. Riley does amazing with labs outpatient but while inpatient he’s struggling. Needless to say they got the labs.
Hoping to see Dr Goldfarb Wednesday but spoke via email. Riley does not have chiari malformation! In any other situation that would be a Yay but in Riley case it was our last hope to finding a cause for the aspirating. Riley doesn’t know the MRI results yet. We will have to break the news to him Wednesday but just want to talk to Dr Goldfarb in person first. Not that anything would have changed. In the end it comes back to Quality of Life and what we as Riley’s parents and what Riley wants to do. There are a lot of things in Riley’s life that make him happy and to this point we (including Riley) aren’t willing to give that all up for the one pleasure of drinking.
On a happier note .. Riley hung out at the #RyanSeacrestFoundation studio for a little while in the afternoon. Of course he was checking out all the #WWE superstars that have left autographs and even a belt on the wall. He was soooo Happy to see his Buddy/bunk mate/child life specialist Eric from heart camp while at Ryan Seacrest’s studio!!! To top it off we played some bingo and Riley won three times!!
Fingers crossed that Wednesday is a good day. He will be going into 48 hours since the infusion so if side effects are going to be an issue this would be the time they would usually start appearing! Hopefully if there’s any side effects it will just be in his calcium levels which are being monitored closely and can be adjusted.
#CHD #Heterotaxy #Transplant #Warrior #BeatingtheOdds Everyday.
* Pic is drawings done by Dr Jackson while we were discussing Riley’s VPI along with his speech and swallowing issues. *
~ Update to Riley’s appts Monday.
Both went well! With a better understand of Riley’s VPI we now see how that wouldn’t be causing Riley’s aspirating. It is definitely a factor in his speech though. They would really like Riley to get more one on one speech therapy to work on articulation. Hopefully that is possible at school.
Once in Orthopedics Riley had his xray and we visited with Dr Deeney. Riley’s scoliosis looks unchanged and between the xray and the recent CT scan there were no new fractures noted! Yay!
Riley will see the speech therapist in plastic surgery again in a year and we will follow up with Orthopedics in 6 months.
Wednesday Riley has an appt with Endocrine. There we will sign consent for Riley’s admission October 14th for his next round of Zometa (bone infusion therapy).
Riley’s Tuesday with Lung Transplant went pretty good!
PFT’s (pulmonary function tests) looked about the same as last time.
Riley is weighing in just shy of 70lbs. So he has finally gained back the 15lbs he lost and added a few more. Of course this is because of his added nutritional boluses he gets everyday via his gtube. They would like to get Riley to the 25th percentile so he has about 7 more pounds to gain before we visit pulling back on any boluses. At that time he’ll need to be able to maintain and gain weight which Riley seems to struggle with just eating orally. We’ll cross that bridge when we get ‘back’ there.
We discussed more about the possibility of Riley having Chiari malformation. As mentioned previously the plan is to do a MRI when Riley’s inpatient in October for his bone infusion therapy. We talked a little more about Riley getting headaches. Before transplant Riley saw Dr Licht in neurology so Dr Goldfarb is going to loop him in with the MRI.
Still waiting on some lab results but what was back when we left looked good.
Riley did get his flu shot today and it played out much like when he gets an IV .. Riley freaking out! It’s crazy because just a few hours earlier he had about 10 vials of blood drawn and sat by himself with a little help from Buzzy and had no issues. As upset as he was he understood he HAD TO get the flu shot. He knows how Important it is to Protect his Precious #GiftofLife.
Monday Riley has appts with Plastic Surgery and Orthopedics. Followed by an appt Wednesday with Endocrine (bone health).
Thank you All for being on this Journey with Riley.
#CHD #Heterotaxy #Transplant #Warrior #BeatingtheOdds Everyday. 💜♻️❤
Update .. Heard from Dr Ryan (GI) and spoke to Dr Piccoli (GI) and Dr Goldfarb this week. GI docs are in agreement that Riley’s impedance probe and biopsy results looked pretty good. There was some minor inflammation in the esophagus and the probe showed some reflux. It was pretty minimal time over the 24 hour period. So the Thal is doing it’s job. We are going to add back a reflux med in the continuing effort to protect Riley’s lungs.
Dr Goldfarb said Riley’s BAL (lavage done during Bronchoscopy) was improved some since March. This is most likely because Riley isn’t drinking and therefore isn’t aspirating as much. There is still some cellular evidence of aspirating/refluxing but hopefully adding the reflux med and with Riley still not drinking that will continue to improve.
Riley has several appts coming up in September including plastic surgery, bone health, orthopedics and pulmonary. In October Riley will be admitted to CHOP for his next round of Zometa (bone infusion therapy). During that admission Riley will have the MRI to check for Chiari malformation.
Until then .. Riley is excited to be back in school and in the 5th grade!!
#CHD #Heterotaxy #Transplant #Warrior #BeatingtheOdds Everyday. ❤♻️💙
Update .. We are still waiting on the final results from Riley’s procedures last week. After some more research and talks with the team we are going to go ahead with the MRI to rule out Riley having Chiari malformation. This will be done during Riley’s admission in October for his bone infusion therapy. Riley does have several of the many possible characteristics listed under chiari malformation. Could also possibly explain Riley’s frequent headaches located at the bottom back of his head. We don’t know but MRI is the only way to find out. If Riley’s doesn’t have chiari malformation then it will be another thing we will check off the list. It’s horrible to have to continue to expose Riley to all this radiation but HE wants answers as much as everyone else. So we will continue to do whatever we need to do to give Riley the Best quality of life NOW!!
#CHD #Heterotaxy #Transplant #Warrior #BeatingtheOdds Everyday. ❤♻️💙
~ EDIT .. have learned since posting this that MRI’s don’t use radiation! Thank Goodness! Riley has been exposed to a lot of radiation already in his 11 years.
Riley’s triple scope was done on Thursday. Unfortunately there isn’t a cleft. We will have to wait till next week for the rest of the results from pulmonary and GI. Now we will go back to plastic surgery and see if surgically repairing Riley’s raised palate could help. Also going to schedule a MRI of the brain to see if there’s some abnormality that could be causing his delay in swallowing. This will be Crushing to Riley but we can technically tell him we’re still gonna try plastics, MRI etc. Just keep buying a little more time until we need to make quality of life decisions. ❤♻️💙~ Riley is still working through the whole process of getting an IV but he wanted to share how Great he is at getting it out with a little help from #OldTownRoad .. 😉
Riley had an appt with heart transplant and GI on Monday with a side of PFT’s.
Riley’s heart looks Beautiful!! Echo, labs and EKG all looked Great!
Unfortunately Riley’s lung function has not showed any improvement after switching to the inhaled steroids and finishing off the Augmentin. Not much we can do as of right now anyway. Riley will have a CT in August and will be have a bronchoscopy done during the triple scope August 15th.
Riley’s appt with GI went as expected. They also want to be a part of the triple scope. They would like to check Riley’s malrotation (post Ladd’s procedure), check the condition of his Thal fundaplication, do some biopsies and place an impedance probe. The probe is placed for 24 hours to record pretty much what’s going on with Riley’s gut .. like if he’s refluxing. Riley will be admitted for the 24 hours. The doctor we saw mentioned if Riley’s still refluxing changing his Gtube back to a Jtube like he had right after transplant. We explained to the doc that a Jtube would be another Quality of Life debate. He agreed and said it may be possible if need be to then just switched Riley’s existing Gtube to a GJtube instead of just J. Our experience has been with just a Jtube that they are hooked up 24/7 to a feeding tube. That’s not the direction we’re hoping to go but won’t know until August 15th.
Before August 15th Riley has some exciting weeks ahead! The week of July 22nd Riley is headed to the eastern shores of Maryland with CHOP’s heart camp for a week! Then the next two weeks after heart camp Riley is going to Liberty Lake Day Camp. We had to move up Liberty Lake camp because of August’s procedure but Riley is just Happy it didn’t effect his ability to go to camp!!
We don’t know what the future holds for Riley but for now we can promise him a Great summer!!!
#CHD #Heterotaxy #Transplant #Warrior #BeatingtheOdds Everyday .. 💙♻️❤