Ry Ry Medical Updates, 2616 Willow Street Sw, Cedar Rapids, IA (2026)

12/11/2024

Sleep study number 5 completed. This one is one I wish we didn’t have to do but due to miscommunication with the specialist and apparently only being able to read live data from their center and no one else’s we had to have another completed after just having one completed in June.

At this point we saw on his last sleep study he is developing higher centeral scores, lower obstructive scores, leg movements of over 300 an hour and we have iron issues. We also are seeing size 3 tonsils. This study is going to determine 1. Do we need tonsils removed, 2. Is it obstructive causing the centeral apnea or are we truly having centeral apnea and do we need the cpap machine again 3. Did the iron supplements that we started in June help with leg movements at all? Once we get these read his ENT will meet with sleep and decide if tonsils need removed, if they do pulmonology is possibly going to take opportunity to do a full scope of his airways clear to the lungs to ensure we aren’t seeing any blockages.

I can say I am tired, I am tired of fighting doctors offices, I am tired of being pushed back and forth, I am tired of my 2.5 year old being tired, I’m just tired. When we think we are okay, test are showing we aren’t. I know in due time his airways will grow enough for him to just have the asthma but boy is this exhausting. If we don’t see improvement but decline then we have to worry about development and these apnea spells possibly hurting his heart in the long run.

Anywho, I’m going to be sleeping real good tonight after only sleeping 2 hours last night and taking a 3 hour nap today. I 100% can’t thank my co workers enough for all they do each day and the support. Work may just be work but when you work with people who care and step in to be in your village it makes a difference!

04/21/2024

Hi all!

Ryan has hit another rough patch, the last couple of weeks he has been snoring at night, pretty sure our neighbors could hear him! I took a gander at the back of his throat and noticed his tonsil were bigger and were very noticeable. I took him to our P*P who said he has +3 tonsils and needs yet another sleep study, I contacted his sleep team and his otto doctor which were able to get us set up with a sleep study September 12th, hoping we can get in sooner as we were back to not sleeping the best. On top of this he ended up with another virus so we are hoping the start of the virus causes the swelling in his tonsils and maybe they will go down 🤞🏼🤞🏼🤞🏼 although his sleep team seemed to think his main sleep doctor wanted another sleep study completed a year out from his first surgery which would have been March this year. Sleep study number 4 here we come 😴😴😴😴. More than likely if he does need the tonsils removed pumology will jump in and do a scope of his airways to his lungs with a possible lung wash, I haven’t spoke to them yet but do know that the last we talked if he needed to be out for any surgery they wanted to do this as well. His medicine regimen seems to be helping with maintaining with being sick, just a lot on a little belly!

02/28/2024

Hello everyone! We have met with all our specialists and had our swallow study completed. The swallow study showed pe*******on but nothing passed the vocal cords. With that pumolgy wants to go ahead and start antibiotic rounds. We start with 10 days of augmentin and then will move to azithromycin three times a week for the next couple of months. We are being followed by pumology very closely and possibly having the airway scope completed in May or June. We are just trying to make it through viral and flu season. If/when the air way scope is completed, otolarynology will join and possibly do a cleft injection. We are looking at 2 to zero days in the hospital. It will all depend what they find/what they do. Hoping and praying the antibiotics will give Ryan relief for short term until it’s a little bit safer to do more of a work up. Also hoping we can stay out of the hospital 🤞🏼🤞🏼🤞🏼 Come on spring and summer! We are ready for you!

01/27/2024

It’s been awhile since I’ve posted on here. We were doing very well and were maintaining for the most part. Our asthma plan was working or so we thought. Around the 11th this month Ryan ended up with RSV, which put us in the hospital, for two reasons, one because his breathing was off and two because we had an incoming snow storm and our ped wanted to make sure we didn’t get stranded at home. Once we got to the hospital they gave him a high dose of steroids and he leveled out. We ended up getting to go home the very next day. After that he was fine for about 5 days and then he developed this very wet nasty cough in which I took him back to the ped to check his lungs because not only was it wet but he was also very wheezy and wasn’t sleeping the best. This cough was not his usual either and he was experiencing fatigue and just wasn’t himself. At that time the ped said that we needed a chest xray, antibiotics and prednisone started again and we needed to contact his pulmonary team and get them heavily involved again. So to the hospital we went to get an X-ray and then he spent the day at home with mom.

The next night my phone rings at 5:30 and it was Ryan’s pulmonary doctor personally giving me a call. He looked at Ryan’s file and in the last 5 months he has been on steroids six times. He thinks that Ryan is aspirating into his lungs when he’s eat and drinking. He thinks this due to two things, one being when Ryan get sick he doesn’t ever fully get over it and the second being the type of cough he is having. The X-ray was another indication. Our plan for now is strong antibiotics for the next month, swallow study and possibly a repeat sleep endoscopy so we can see how his airways are and if they have improved or have more swelling with the trachomologia. We see his ENT on February 13th for a follow up on tubes but the pulmonary team was going to contact them about the sleep endoscopy so we will probably find more out on that when we see the ENT. Then on February 22nd we will be headed down for his appointment with the pulmonary team and the swallow study. We were also told that if we needed any ER visits and he was well enough to transport to the U they would prefer him there.

Matt and I feel like we are experiencing dajavu all over again. We are just going through the motions and hoping we won’t need any major surgeries and all test show normal. On the outside on the good days he’s a normal, very active little toddler! Onery and bull headed for sure!

I can’t express how thankful I am for our ped, he is the best and listens to all my concerns. The team at the university has been super attentive also. I knew when I saw the U was calling at 5:30 at night it was more than likely going to be a very informative call. As a parent who has a child with respatory challenges I am so glad we have a great medical team. It really does help knowing we are in great hands.

05/25/2023

After weeks and weeks of me calling , and the help of the doctors we were able to get RyRys sleep study moved up to June 13th. We also go meet with a geneticist on Tuesday. the sleep study is going to show if the surgery worked. It’s also going to tell ENT and the pulmonologist if we are dealing with an upper airway issue or a lung issue and from there it’s going to determine our next move. If it’s an upper air way issue ENT is wanting to do another sleep endoscopy to see where in his air way is blocked AND if his trachomologia has gotten worse or better. The genetics team is there per the request of his primary. His primary is just wanting to make sure we are not missing anything.

Plus side we have went one whole month without a hospital stay! WOOHOO! Knocking on wood we are able to continue that streak!

04/30/2023

Our Friday was pretty scary. I’m sharing this just to put in perspective how fast things can change with this guy. The first photo I received from daycare at 730 am. He was happy and playing. At 9 I got a call that he was not acting himself, fussy and just not a happy boy, they took his temp and he was 102.6. When they called I asked about breathing/congestion in which he had none. In the 15 minutes it takes me to drive to daycare he had developed lethargic behavior and couldn’t catch his breath. Daycare gave him two puffs of albuterol. Got home and hooked him up to the pulse ox machine and he was running 84-86. Matt was able to give him 4 more puffs of albuterol but he just wasn’t responding. We got to the doctor and he was grunting while breathing, breathing fast and his skin was starting to change colors. He received a high dose of steriods via shot and within two hours he leveled out. Temp was still a little high but we were able to get that down with ibuprofen and tyelnol. His health declined all with in two hours and even more so within 15 minutes. The doctor we saw was leery on allowing us to go home but was confident that if we needed to go back to the er we are well versed on when to go with our history. He’s finally leveled out to some degree, still fussy but he’s breathing normal and playing.

04/04/2023

Hello Family and Friends!

I am hoping that we won’t need to add much to this page but I have made and invited all of our close family and friends. Every post I make on my page I get questions and suggestions, which some I do apppericate while others are hard to take as we have had tried many things and are doing many things. I wanted a place where I could update everyone at once whom have been caring, praying, thinking, donating, and sending us all the good things!

There really isn’t a big update since our last hospital stay but we were able to get our Pomologist appointment moved up to tomorrow morning. I am anticipating not much to come out of it other than more discussion of making sure to keep him as healthy as we can and what steps to take when he becomes Ill.

Again, we appreciate and love each and everyone of you!

Ry Ry Medical Updates

12/11/2024

04/21/2024

02/28/2024

01/27/2024

05/25/2023

04/30/2023

04/04/2023

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