Wednesday, August 26, 2015

Nesiah's Wheelchair

Nesiah got a new set of wheels. We are hoping she will learn to navigate it herself! 

Meanwhile she and Bubbie have fun doing projects on her tray! 

She loves the app on the tablet. 

the kids are getting Nesiah's opinion on something..  (this is her crib where she takes a nap every afternoon)
We do a lot of voting in order to decided what activities we want to do. On this day, they were trying to get Nesiah to vote for something. It was hilarious to watch. Nesiah does well at choosing between two options. So they each grabbed a toy to hold her attention, trying to find the thing she would chose so she would vote for their side. 

Tuesday, August 18, 2015

Oh, Asthma how I hate thee...

(I wrote this right after our hospitalization in July and never got to post it until now)

Last year on July 13 Bubbie had his worst ever asthma attack. It came on suddenly and got worse FAST. I was canning tomatoes. I noticed his breathing was not right, as I carried him in my backpack carrier. I medicated him then continued canning. I made effort to stop every 3 hours and give his meds. He kept getting worse and fast. I took him to the Dr while the last jars were still boiling. The big kids all went to a neighbor. The dr called the ambulance. The hospital admistered meds and oxygen. We were admitted for 12 hours. He came home and we were unable to go outside for the entire months of July and August.

Two weeks ago, he started suddenly with a very high fever, right after I left him in the church nursery for the first time in over a year!
I worked on treating the fever. I gave his meds, everything I had. He did not improve and we added respiratory issues to the mix. He started wheezing Tuesday... He and I were up every 2 hours Tuesday and Wednesday night. Thursday he had a fever of 104.5 I called the ped, who advised me to start steroids and bring him in the next morning. By morning his fever was gone. But I took him in anyway. He was getting round the clock albuterol and atrovent. He was also on steroids by this point. His temp was normal and his lungs clear at the pediatricians.

He was not himself all week, he wanted to be held. He actually sat still and stopped talking nonstop.

Saturday he seemed better, so I left him with a trusted sitter who knows how to handle his allergies. When we got home late that night, I put him to bed. I took a bath. But I had a bad gut feeling.

I checked his lungs. He sounded AWFUL. His breathing was shallow and his oxygen low, even after back to back treatments.

My normal ER babysitter was out of town. I managed to get another neighbor girl to come over to stay with the big kids and off to the local ER we went.

I hate this ER. After our last visit, I said I would never go again. But my other option is 30 minutes away, in the city and it was July 4. So I decided to go to the local one. Big MISTAKE!

The checked his oxygen level, it was a lil low and he had a minor wheeze. They gave him albuterol. They did a chest xray and said that he possibly had pneumonia in his left lung. Now every other time, his right lung was the first to show any sign of infection!

They gave him an antibiotic. The problem we encounter with this is, his food intolerance. Steroids and antibiotics can not be given in syrup because they create a monster. So we had to find a tablet/capsule with the right ingredients. Yes,I will insist on seeing ingredient lists and helping with choosing his meds! I have to live with the child! 

So they gave the meds and discharged us. It is now 2 am, I have a toddler who has not slept since 2 pm. I am exhausted from being up and stressing all week. But I ask the nurse to please check his oxygen level since it WAS NEVER CHECKED AFTER GIVING TREATMENT!

In the Dr office or any other ER, an oxygen level of 89 requires oxygen or an ambulance. In this ER an oxygen level and wheezing means you get send home!!! I was furious. I debated insisting they treat him again. But I had that gut feeling that it was time to move on. I left.

I took Bubbie home. I put him to bed. I told my babysitter that there was very good possibility I would call her again. I listened to him. He sounded worse. I gave a back to back dose of meds and a double dose of prayers. I slept for 3 hours.

When I woke around 6, I knew what I had to do. It was time to head to the Big City, an hour away, where all his specialists were. I called all my neighbors. No one answered. They were all out of town. I finally called the girl that had stayed with them the night before. I also texted my kid's favorite sitter.

While I waited for a response, I packed a bag. I planned for 2 kids to go with me and 3 to stay with the sitter. I had the kids do quick chores. I gave meds and watched carefully, praying hard.

Finally sitter #1 arrived and just as I was leaving sitter #2 texted back. Miss N lives 30 minutes from us, but she would come ASAP. I quickly made the decision to leave all the big kids, except for David with her. They love her and she loves them.

David, Bubbie and I drove down to the Children's hospital. It was a very very long drive for a tired, worried momma.

We arrived and I had trouble finding ER parking. We finally get inside and they take one look at Bubbie, whisk us into a room and start checking him out. I could finally breath.

This children's hospital is huge and one of the best on the East Coast.

They went over everything we had dealt with. They gave him a huge, mega hour long albuterol treatment. He screamed and fought me the ENTIRE hour. They told me that if I could not get him to take the meds they would wrap him in a sheet and force him to take it. My weary mother heart could not fathom allowing them to do this to my sweet boy. I prayed HARD and held him snugly in my arms until my arms ached and my legs were bruised from his kicking. Yes, security walked over to check on us.

They did another xray. They determined that he did not have pneumonia. He was simply have a major asthma flare up.

Right after his hour long albuterol treatment and his xray, his oxygen level dropped to 90. They immediately put him on oxygen. Thankfully he did not fight that.

They wanted him to either have an IV med to make the albuterol work better or another hour long albuterol treatment. I prayed and prayed... His oxygen level suddenly went back up to where it was supposed to be. Not perfect but def improved. The nurses could not believe it.

They did not have to do another drastic treatment. God def was looking out for him. We were admitted to the hospital for 24 hours. We shared a room with a teenage muslim boy. Thankfully Bubbie was exhausted and finally breathing better so he slept much better then I ever anticipated. Meanwhile David (11) and I had to share a tiny cot of a bed.
Bubbie drastically improved in 24 hours but had been running and playing, so was red and sweaty when we encountered the Dr on their rounds, so they required him to stay all day to be monitored. They released us on monday evening, a little over 24 hours after admitting him.

We came home late Monday evening. I got to drive the Turnpike and The expressway during rush hour traffic. But we were so thankful to be going home that we didn't mind!

Meanwhile back home. Miss N had taken over my life. There are not many people that can do what I do. But Miss N comes in and does a great job. She took 4 of my kids including Nesiah, to her house in my big 15 passenger van. She and her family made it a fun day for my kids. They helped my kids to relax and not worry about their baby brother. They made fun memories. Then she brought the kids home and made sure all the animals were cared for. She slept over, which allowed my kids to sleep in their own beds. She made breakfast, helped with chores, got Nesiah off for her first day of summer school. The girl amazes me every time!

The kids spend the day, on Monday with neighbor friends. I am so thankful for all the people who wrap around us.

It has been incredibly hard to see how much progress we have lost in the last week. The potty training went down the drain. Bubbi is back on his bottle and has even less foods he tolerates. We are back to being trapped in our home because of his allergies, the air outside!

We do have our happy, active, never stops talking or moving toddler back. He still needs frequent treatments and max meds. He is back to getting 90% of his nutrition from his infant formula.

We trust that God knows what he is doing.