Mom Update April 2023

Super sorry for my very late and delayed update... I will be honest this was by far the one procedure / event/ life defying moment that my life finally sat still! yes quiet.still non - moving and well I shut down ... Thank God he sent Shelsea Becker to be there for me b/c I honestly don't think I would have (of course I would have pushed thru) but he knew I needed to be carried the week in Boston a little. but this isn't about me!!

Liam.... So I have been trying to get the ENT here to help me with Liam hearing loss for a few years. We have done Sleep Studies and the Neuro did a 48 hour MEU which is helping with another issue. But Liam left ear wasn't passing the hearing test over and over repeat... What is the saying ... Doing the same thing over and over and expecting a different result... Well DOC maybe with a neurotypical child!!! NOT WITH A KLEEFSTRA CHILD!!!

So we traveled 24 hours .. thought it was a 17 hour drive (Austin is 15 ) So I was like I got this!! The hotel in Boston with Children’s Rate was $2525 with parking… (no we don’t qualify for Ronald McDonald I tried) No Airbnb wouldn’t be cheaper b/c they either didn’t have parking or I would have had more parking travel expenses than the fee at the hotel… I know you are trying to offer suggestions … I appreciate love , concern and suggestions but I promise I have tried it all!!!! (Don’t quit offering help if you are in my shoes and have an avenue I might not have exhausted) But we left our home at 4:45 in the afternoon and stopped at The SHE WILL gathering with Shelsea, Victoria, Sarah, Kelly, Liz… and all the awesome She Will Sisters that love us and prayed for us. Next of course Buc-ees because Liam most favorite thing needed to be first before this long week…. Then onward we went… I drove all night thru Virginia and was doing great. Crossed West Virginia and Maryland and into Pennsylvania and I was hitting my end I felt so we pulled over at the state line welcome center walked around , went to the bathroom and I took a 20 min Power Nap. Needless to say it helped thank God bc I didn’t have the money to pay for a second hotel for the same day!!! I knew I had to make it b/c we needed to save what money we had for the week and any surprises… Made it into Jersey and had al to of fun getting over the George Washington Bridge and fighting NYC traffic honestly could have lived out the rest of my life and not driven in NYC and been fine with that but made it thru Manhattan into Connecticut and on into Maryland!
Finally Arrival at 4:50 in the afternoon and of course there is a BIG Ball game and party going on for ST. Patties of course you know that Boston Childrens is located by about a million colleges so big college town… Arrived at hotel and they said my reservation was made for Feb not march … Was about to puke instead I began to cry! 24 hours with 20 min Power Nap, NYC and well I was just wanting a BED. She was able to get us into a room and the room we booked I didn’t care at that point I was probably charged last month for not showing. I went to the car to get our stuff to have it literally fall off the weird shaped cart like not kidding 4 times and a sweet kid going to his car from work saw us and helped me to the elevator with all our things.. (no I couldn’t make two trips to the car … that would cause a melt down and Liam to sit on the ground or in the room and make it to where I had to carry him and he is 70 lbs and it wasn’t going to happen) Although he did think it was funny it kept falling off the cart so I had to chuckle a little in our nightmare moment.
When the elevator got to the top 8th floor a young couple was headed to the hospital to visit their infant daughter and saw the distress in my face and helped us to our room with all our belongings!!! Such kind people that fell from heaven in my time of need let me tell you.
We got settled and finally took the cart back downstairs and I took Liam to the food court in the building to get him some food.. of course he chose orange chicken from the asian lady he likes and she filled his plate b/c she was about to close and gave us a lot of free stuff and thanked us for helping her not have to throw out food.. (another blessing ).
Finally I was super excited it was time for me to actually lay down and Liam was happy to lay down as well.. All the Buc-ee Blankets and stuffed toys were in bed and he was covered and saying night night…

Sunday so much to organize and get ready for the week wanted to make sure my computer would connect so I could work here and not have surprises and not be able to connect Monday morning! We went down for breakfast they gave us free breakfast but I knew Liam wasn’t going eat bagels or what they were offering but got fruit for him just in case and got me a bagel. I ordered him pancakes b/c I knew I couldn’t go wrong with that. The restaurant people are nice but the service is very slow … we went upstairs and rested for a bit and then Liam and I walked to Target showed it was a little over half a mile and didn’t want to walk after dark so we headed down to find wagon so if Liam didn’t want to walk back to the hotel he could ride. Of course TOY department was the biggest time spent in Target and he thought it was super cool to watch the shopping card ride up beside us on the escalator. We got a wagon loaded our stuff in the back and headed back to the hotel… IT was a little chilly but was nice to get outside for a little while . We went back got some dinner … Maggianos .. Liam was all about some Raviolis and chocolate cake .

Monday time to sort for the week.. Started to get prepared finally rested a little and Liam was enjoying watching the helicopters and ambulances from our window.

Tuesday it begins. We went to the hospital for preop. That was fun.. Liam has a cough b/c he has had drainage and crap for 4 months. So they put us in a high risk room a little stupid since we had covid 6 weeks before but I just went with the flow. The sweet lady came in asked if he would wear a mask told him he wouldn’t and she didn’t say anything again about it but was so sweet. She did height weight and vitals. Next the next nurse came in to get all the information on Liam . They asked us about past and present medical history etc. The computer wouldn’t start so it took a very ver long time to get things sorted. But he was apologetic and super kind. After he finished the lady came in to do blood with an assistant but Liam of course doesn’t need that he just holds his arm out. . (much better patient than me) Finally after 4 hours of prepping we had to go down to get the covid test but of course we stopped at the gift shop first for all his patients and working with the nurses. After leaving the gift shop we walked down to the PARKING GARAGE ..yes parking garage!!!! And sat in a chair in the garage next to wear other people would park for covid test or park to go to work or to their appointments.. What a sanitary place to take a test!! NOT.. was a little confused at why they didn’t just do that in the appt when they did everything else……. But whatever!!! After that we walked to the grill and got some lunch (last real food for Liam for 2 plus weeks. He could care less… of course.. he loves pancakes, jello, oatmeal.. Shelsea my dearest friend showed up this evening and I was super grateful to have her to help and support. We took Liam and went walking around and looked at the geese and walked all over the colleges and looking at everything. What a beautiful area. We walked over to the Walgreens and enjoyed dinner and walked back to get some rest before the next long day! Gave Liam his 12 CC loading dose of his Blood clotting medicine and let him eat around 11pm so he wouldn’t want to eat in the am… :) knew he was going to have a long day with no food and wanted him to sleep as long as he could until our appt.

Wednesday.. here we go!!! 11:30 am I was supposed to be there but I misread and thought I was supposed to be there eat 12:30… But all was good. We got there , got checked in and everyone was super kind and helpful (we did arrive at 12:15) Luckily they were a little behind on the surgery before use so I felt a little better. I am never late and if so it is typically from something goofy.. I was exhausted and overwhelmed… We got checked in , got Liam in his tiger pajamas and answered all the typical questions . Anesthesia came in and discussed after the nurse was done and then the doctor and resident came in to explain procedure again… Asked if we had questions and then told us it was about time. They came and got him and my heart really kind of felt heavy and my stomach was in some weird knots. So glad to have a friend … But we were both starving and if you have been to Boston Children’s it is a maze…. The nurse took us over to the waiting room and it felt like we walked a million miles the opposite directions of where Liam was having his procedure!! We got a drink and snack and sat and waited. Seems like we waited forever it was a little over 2 hours of waiting and Dr. Shearer came out to show us what he found … Liam airway was smaller than my pinkie!! It was super tiny. They didn’t realize how bad until they got in with the sleep endoscopy …. They also found that Liam esophagus was full of puss and infection. He did a complete clean and got all the infection out of his esophagus and then he cleaned out his ears and told me there was so much infection and gunk there was no way an antibiotic would ever clear out the gunk without this surgery. He did a complete sinus cleans as well and took tonsils and the part of the adenoids that had grown back and also inserted tubes. Liam Tonsils were way bigger than they thought when they got in there it was more difficult. Liam was having lot of trouble breathing. He also told us that they found another diagnosis (issue) Liam has a laryngeal Cleft. Which is. : an abnormal opening between the larynx and the esophagus through which food and liquid can pass through the larynx into the lungs. This causes a number of eating and breathing problems. So this is something else we have to get repaired soon. Dr. Shearer Colleague created the repair for this and he was setting our procedure up with him. They are also setting up our sleep study, swallow study and GI appt since the Vanderbilt doctor had no clue how to treat our children and wanted to solve the issue with 4 packs of miralax a day.. (an adult dose is 2 daily not to exceed 4 in 24 hours so asking me to give my 7 year old that much I knew she was NUTS!!! And glad someone agreed with me on the medical side. We will also see a psychiatrist just to be established with someone that doesn’t have to google Kleefstra and have a baseline so we know what his norm is and see what happens at puberty if we need them we will be set up … if we don’t .. WE are Blessed in that part of the Kleefstra Journey. Back to the Laryngeal Cleft. This is something that concerns me b/c our kids have been known to pass away in their sleep I worry a lot with the chest infections and other issues and really want to have this repaired!!! After our talk with him he went back to make sure he signed his shirt and we went to wait for them to get me to go see him. We got into recovery and had a great nurse and were able to ask questions so. I wasn’t totally clueless in this whole process. She told me the cough would be normal .. (it sounded painful) she ordered him pancakes for him to eat once he got good and awake. He woke up and he was a little confused I honestly wanted to cry looking at him .. Shelsea was like no no no .. don’t cry he is good!! Lol... he acted like he was kind of hurting so she gave him some meds and he went back to sleep.. his O2 dropped a little and she was there super quickly and he woke up a little … after all the big anesthesia wore off he was back to himself a little . WE got into our overnight room and had a sweet nurse named Sara.. I ordered food for Shelsea and I and Liam raviolis if he wanted them.. they said he could have all the pasta he wanted … So we tried he did eat 3 pancakes and jello so they were happy with that. And he was drinking some. He slept a lot. Sara kept coming in to check on me.. She said … Momma take a nap let me be your eyes, ears and you get a little rest for a change. She was the nicest person … Everyone in that hospital was top notch and I have never felt like someone honestly cared about Liam like this. IT was so nice to have people that knew what Kleefstra was, knew about our kids breathing , respiratory and knew how to treat him. It was nice to not see them google his condition and act like they know more Than me… B/c Googling isn’t going to make you know anything about Kleefstra!! Good luck … THAT IS WHY I WENT TO BOSTON… So over being ignored and mistreated by doctors who only seem to care about neurotypical kids and only appear to know how to treat a neurotypical child. Boston knows how to treat all kids and knows that they are not all the same inside or out!!!!! Wish other doctors would broaden their thought process. Outside of their medical book.

Thursday … Next morning we had a new nurse named Sara as well. She wasn’t as upbeat and friend sure missed my night nurse and Deanna in Recovery they were so friendly. (New Sara was nice but obviously busy and just doing her job keeping her distance ) All good.. She came in went over all of our medication explained to me in detail how everything was to be administered every 3 hours . They had to call in more blood medicine for us they wanted him to take thru day 7 to make sure we had no major bleeding issues. When we were getting our things together Sweet Zoe from the Kleefstra Clinic came to visit us as well .. Was so nice to have a visitor and feel loved… She even Brought Liam a sweet get well card! Love feeling like we finally have a team willing to support us on this crazy journey the last 5 years have been brick walls and dead ends so nice to have some form of direction.. We finally got released and of course off to the pharmacy and they didn’t have the medicine had to get it ordered and told me it would be in the next morning. So we walked and saw Ryan Seacrest studio and went and got a toy of course again at the gift shop he got a frog that sang oh LORD!! It was silly but he loved it … HE wanted to walk so we walked to the hotel and got settled and worked our medication schedule out. Shelsea helped me with everything and helped me so I could take a shower I desperately needed!!! I wasn’t feeling great and it was so nice to have love and support. B/c this is one time I think God knew I needed someone to carry me a little I was most overwhelmed I have ever been in my life!!! Shelsea had to fly out this evening super sad to see her go but was so glad I had her during the hardest of the trip. She got home super late but of course I was up and down like a newborn with medication for Liam so was relieved she made it back to Austin and grateful James shared his beautiful bride with me for a few days!!

Friday … we got up and I worked some … but also took a nape b/c I was exhausted…. I stayed on top of work was pretty happy I didn’t get too far behind. Fed Liam oatmeal and jello and we went down to hospital at 2 to pick up Liam blood medicine so I wouldn’t run out before I left on Saturday. Liam appears to be doing ok. We rested in the room and I tried not to make him go out much. I did pick up some food for us down stairs got me a coffee to survive … my days were definitely running together… Ordered raviolis again for Liam and chocolate cake and he was super happy to eat that .. They had a helicopter landing again and he sat in the window to watch and took lots of naps all day .. he was definitely very tired… (odd for my non-sleeper )

Saturday - wanted to leave at 4 didn’t happen… My Aunt Michele text me their address and we got on the road around 8:30 am to head to Aunt Michele and Uncle James house. WE didn’t end up getting there until after 3 due to some traffic but we got there. Was going to drive some more but decided we would stay over and rest and get on the road the next day.

Sunday… My grandpa Tommy came by the next morning to say hi and see us while we were there and Uncle James went and got Breakfast for Liam. And me a coffee (FRAPPE). Had a GREAT visit but back on the road and lots of traffic in Baltimore and Washington …. But we got to see some things and made it thru. Would have loved to see my Aunt Ilona and Uncle Roy but they were on a Cruise. By now I am ready to get moving. Liam and made some stops and enjoyed some of the new states, the weather was much better today .. Liam is still ok he doesn’t appear to be hurting but we are keeping on top of medicine best as possible the traffic threw me off a little not having an easy exit off of the highway but we kept up and kept going. We stopped at the Kentucky Buc-ees on the way home it was his first time at that one.

Monday am at 4am. We arrived at home. We unloaded the car and I laid down with Liam (around 6am) in his room and took a 2 hour nap and at work by 8:00 I don’t know how I made it thru the day…. But 3 hours medicine keeps me up a lot…

The next week was rough making sure I didn’t mess up on medicine. He seems to be in good spirits and doesn’t appear to hurt he is drinking and eating so I feel good with that …. Day 7 I was worried b/c they said it would be when the scabs fall off so blood medicine is still needed thru then.
His cough has picked back up and I am worried something else is in his lungs .. send a message to the doctor today b/c he nose started bleeding and he has’t had a nose bleed a day in his life. Hopefully I will hear from them tomorrow. Other than the cough and nose bleed he appears To be healing I looked in his ears and they both look better.. The tubes are definitely in and looking good now. There is still some redness but it appears from the surgery. Hard to see his throat with his big tongue could not get him to work with me well on that but his nose I am still unsure where the blood acme from … Will update later but this is where we are on this crazy journey…

Tuesday I will see the local ENT the one I have been trying to reach since November 10th… First question will be…. 1. Did you get any of my messages? 2. Do you want to work and treat a child with a complex medical issue or is this condition too much for your work load.. Then we will move on with the next questions after those answers are addressed…

love you all and thanks for following .. Michelle