I have been super busy and just got finished organizing and labeling the 1500 photos that we took on our BENELUX & BALTIC ADVENTURE. I will be back posting those, but I still need to keep up with our current life.
I was extremely surprised at how well we all did with the jet lag coming back. Theo was all ready for school on Monday (October 17th), so I got him ready and he promptly fell asleep in his wheelchair before I even got him out the door! His friend "Gary", bus driver, and bus aid were very happy to see me roll Theo out of the house and onto the bus.
After I put Theo on the bus I went back into the house to work on my LONG to-do list. While I was checking our credit card statement I noticed a charge from the cruise line. When we left the ship we actually had a negative balance on our statement, so we should have received money back. The cruise lines customer service phone line is only open M-F from 10 AM to 4 PM (PST). I send them an email and got a response saying they were super busy and would get back to me in 6-10 WEEKS! Ugh! When customer service opened at noon I called them. I was on hold for 90 minutes when I hung up. I had to get Theo from school and take him to PT and I couldn't just be on hold all day.
I was a little worried about how Theo would adjust to being back at school, but his aid said he did great! He was actually awake and alert most of the day and worked really hard. I then took Theo to PT.
Theo didn't have any seizures today.
The next day (October 18th) Theo's class went to the pumpkin patch! It was freezing cold so I put extra layers on Theo, but I guess he was still cold. Good thing is aid, Ms. Jess, brought an extra scarf!
While Theo was at school I worked on my to-do list and then right at noon I called the cruise line customer service number. I was determined to get through to someone, so I made sure my AirPods were charged and ready. They still didn't answer 90 minutes later when I had to pick Theo up from school, so I put I listened to that elevator music all the way to his school, then I put in my AirPods and spoke to his aid and teacher briefly. We then drove to OT while STILL on hold. I was determined to get through so I put my AirPods back in and took Theo inside. At the Towards the end of Theo's session someone FINALLY answered! I was thrilled! I told her what was going on and she said she would look into it. After being put on hold and chatting with customer service for 30 minutes she finally figured out what was going on. They charged our statement $250 on the final day because they claimed we took a portable BOSE speaker. I told her I knew EXACTLY where that speaker was. I had put it in a cabinet in our room before we got off the ship. She said they would have to do an investigation and it may take a few weeks? WEEKS?! Really?! The room attendants go in there every day and I told you where it was. At this point I was starting to get upset. Why would I spend a crazy amount of money on a vacation (we booked the largest suite on the ship) and then steal a $250 speaker? I've never stolen anything in my life and to be accused of it was so humiliating. Of course, after being on hold for four hours and talking to the representative for almost 30 minutes, nothing was resolved.
After we hung up I called Josh and told him what was going on. I was bawling. I think it was the combination of stress and humiliation. Listening to the same song over and over for four hours can drive you a little crazy AND I couldn't answer any calls or make any calls during that time. I was so worried that the customer service call would drop.
A few minutes after I talked to Josh I got a call from the customer service representative that I had spoken to earlier. She apologized and said that after the investigation is done they will refund me the money. She then asked if I wanted it in the form of a "future cruise credit." I was still so upset that I told her we may not travel with them again, so they can just send the refund to my credit card. And of course that made me even more upset. I feel like our traveling days are coming to an end and our best bet to travel with Theo in the future would be this cruise line. They are so accommodating when it comes to wheelchairs and accessibility issues (mostly because they cater to an older group). If we can't get Theo up and bearing weight on his own two feet, we are going to have a hard time leaving the house period.
But, anyways... I got distracted.
Theo had one seizure today.
On Wednesday, October 19th, Theo woke up with some crusty's around his nose. I was hoping it was from all the hay that Theo came across the day before at the farm (it was literally all over his clothes and wheelchair). He seemed fine so I sent him to school. Just an hour before school ended for the day, I got a call from the school nurse. She said Theo had been coughing and his breathing was "a little wheezy." I told her I would call the pediatrician and come and get him.
[Art from school]
[Please vote!]
I got Theo home and called the Pediatrician. She said it could be RSV (since that's going around), so we can get him started on nebulizer treatments.
[Not COVID]
That afternoon we Zoomed with Theo's speech/feeding therapist and dietitian.
Theo had two seizures today.
Thursday (October 20th) I headed out to run errands while Josh stayed home with Theo. I went to the jeweler to look at a few bands they had ordered in. They forgot to order in a few that we had picked out, so we'll go check those out once they get in. I then headed to see my esthetician for a microdermabrasion and facial. She said my skin is improving, but it turns out I was washing my face too much during the day. She wrote down exactly what I should do and she told me to resists the temptation to over wash my face. I'll see her again in six weeks and we'll go from there.
Theo was coughing all day, so we did his nebulizer treatments every four hours. He was also very tired, but didn't have a fever.
He didn't have any seizures today.
Friday (October 21st) was a PJ day at home. Theo continued to cough and sleep a lot, I worked on labeling photos from our trip, and Josh worked.
[We may be in for a wet winter]
Theo didn't have any seizures today.
On Saturday, I headed up to the Naperville Farmers Market. I wanted to buy some more Elderberry syrup kits and fresh honey before they shut down for the winter. The lady that sells the syrup wasn't there, but I was able to buy some cheese, honey, fresh bread, and rosemary olive oil 😋
Theo didn't have any seizures today, but he did sleep and cough a lot.
On Sunday, October 23rd, I noticed that Theo was breathing with his stomach and abdominal wall. I saw a few videos on red flags when it comes to RSV, so we bought a pulse-oxygen meter. While Theo was napping I put the device on his finger. His oxygen levels were around 87 and his pulse was 142. I decided to call the hospital in Ottawa to see what we should do. After talking to a nurse for 30 minutes she suggested that we bring Theo into the ER.
We packed our bags and headed to Ottawa. Once we were taken back to our own room in the ER the doctor and nurses came in to chat. We told them what was going on and they did a nose swab to check for the flu, COVID, and RSV. They also did a chest x-ray and hooked Theo up to a machine that would monitor his oxygen levels. After a few minutes the doctor came back in and told us that Theo was negative for the flu, COVID, and RSV (yay!), BUT his x-ray showed pneumonia in his left upper lobe or it could be a collapsed lung (I guess they look very similar on an x-ray). He said they wanted to admit him. While we waited for a room to open up the nurses started an IV and took some blood.
We have never stayed the night at the Ottawa hospital, but it's pretty similar to its big sister hospital that we frequent in Peoria, just smaller. The biggest issue is that his hospital doesn't have a PICU, so if Theo's condition gets worse they will have to transfer him to Peoria.
We got settled into our room and decided that Josh would stay the first night with Theo and I would go back to the house. Theo only had one seizure today.
During the night Theo's oxygen levels stayed around 88 and in the morning (Monday, October 24th) he started High Frequency Chest Wall Oscillation therapy (aka "the shake-shake vest"). This vest vibrates very quickly and is supposed to help breakup all the mucus and gunk in Theo's chest. He can then cough it up. He will be getting this therapy (along with a breathing treatment) every four hours.
They also started Theo on antibiotics just in case he has a bacterial infection AND they did another nose swab to test for more viruses.
The pediatrician's stopped by to check on Theo. They said these things take time to clear up and hopefully we will be out of here in a few days if Theo progresses.
That night we got the results of Theo's second nose swab: positive for Rhinovirus. Yes, the most common of common colds.
Theo only had one seizure today.
Not a whole lot happened on Tuesday (October 25th). Theo continued to rest and get all his treatments (he really loves the shake-shake vest). That night they had to put in another IV. The one in his arm failed, so they had to poke my poor kid again.
Theo only had one seizure today.
Wednesday morning (October 26th) they repeated the x-ray and got the results back from his blood cultures. The x-ray showed improvement, but the pneumonia/collapsed lung is still present. The blood cultures show no growth, so he does not have a bacterial infection. Theo's lungs continue to get better and better everyday! The doctors stopped by again and said we could probably go home on Thursday if we want to. We can do the nebulizer treatments at home, but we don't have a shake-shake machine. I thought it would be a good idea to stay one more night and get as much out of the shake-shake machine as we can.
Theo had one seizure today.
The next morning (Thursday, October 27th) while Theo was getting his High Frequency Chest Wall Oscillation therapy I spoke to the respiratory therapist about things we can do at home to help Theo's lungs. He gave me a chest percussion cup and showed me how to position Theo to get the most out of the percussion cup therapy.
In the afternoon the Pediatricians stopped by and asked me if we felt ready to go home. I told them that I wish we could take the shake-shake machine home, but I felt confident that if we use the percussion cups and nebulizer every four hours, we will be fine. I also asked them when Theo should be able to go back to school and therapy. They said that recovery from pneumonia can take 6-8 weeks, but since he isn't contagious he can go back to school next Thursday (November 3rd).
Theo had one more shake-shake and breathing treatment while I started packing. Josh showed up (he was running all over Chicagoland for work) to help us finish packing and escort us home.
We were all so happy to be home after a long few days in the hospital.
Theo didn't have any seizures today.
I woke up Friday morning (October 28th) with a runny nose and no voice. I knew there was a VERY high chance that I would catch the highly contagious common cold from Theo, but it still sucks. So far my worst symptom is that my voice is gone and I'm coughing. But I think the cough is mostly due to the harvest, but who really knows? As along as I keep up with my DayQuil it's not too bad.
Theo and I just hung out at home today while Josh went to work. Theo is still very tired, but he is not stuffy anymore and his cough is not as wet. I did the breathing treatments and percussion cups every four hours (even when he was napping). His oxygen levels are 97-98 and he is not breathing with his abdomen. We also put books under the foot of his mattress so his head is on a slight downward angle. The respiratory therapist said that will help get the crap out of his lungs too. Gotta use gravity! We are also doing his breathing treatments and percussion cups on an angle when we can too.
[Theo's bus driver and bus aid miss him!]
Theo had one seizure today and took a four hour nap!
Over the weekend we continued to rest and give Theo his breathing treatments. Hopefully Theo will continue to get better, so he can go back to school on Thursday!
Theo didn't have any seizures on Saturday, but he had two on Sunday.
[Much better numbers!]
Thank you to everyone for your thoughts, prayers, and good vibes! Theo is at a higher risk for hospital re-admittance and we REALLY don't want that to happen. So keep sending those good vibes our way and we'll continue to do our part to keep Theo happy and healthy.
No comments:
Post a Comment