We left the doctor's office hoping to get Connor some rest and to pick up his prescriptions. While we were at the pharmacy, Connor threw up his oral steroid. It was an absolute mess. After consulting with the pharmacist and leaving a message for the doctor's office, I decided to give him some more of the dose while he ate his breakfast. Again, he threw up. Since it wasn't going well, I put him to bed after administering some additional breathing treatments.
He woke up from his nap, ate some lunch and seemed to be doing o.k. He was still laboring to breath and wasn't getting that much relief after his nebulizer treatments. We picked up Jackson from school and tried to get Connor to rest some more. Michael got home early enough to take Jackson to soccer practice. Immediately after they left, I offered Connor water, which he threw up. Connor NEVER gets sick much less 3 times in a couple of hours. I decided that when Michael got back, I was taking him to the ER as clearly he couldn't keep his medicine down and it didn't appear to be doing any good.
We arrived at the E.R. and Connor was given continual nebulizer treatments to no avail. There would be a slight increase in his oxygen levels but it immediately would go back down. And, with being on continual oxygen, it should have maintained the regular number. The respiration therapist had to come back so many times that I could tell this wasn't going to end well. He also received a chest XRay to see if they could find anything. The XRay was relatively clear and they still had no answers. Pneumonia was tossed around as a possible diagnosis along with exacerbated breathing. While he went through treatments, we watched Willy Wonka and started another movie. We can't say enough good things about the Pediatric ER at GBMC. Because it was so crowded on the day that he got his stitches, we never made it back there.
After getting some more stats, it was determined that we would be transported via ambulance to Johns Hopkins PICU so that he could get on high flow oxygen, which was not available at GBMC (cue panic). It happened so quickly. The day before he was playing soccer and at a pool party and now we couldn't wait for me to drive him down to the hospital.... Luckily, Connor fell asleep as the arrangements were made.
He woke up around 3 a.m. Tuesday morning for the transfer (note: we got to the ER slightly before 8 p.m. and were taken back immediately). I had to say goodbye to him and sit in the passenger seat but could hear him talking to the ambulance staff. He was exhausted but in good spirits understanding that he needed more help that GBMC just couldn't provide.
On the ride to Hopkins, he was pointing out locations that he knew to the girls in the ambulance while receiving his continuous nebulizer treatments. I look forward to one day that this sweet boy won't have to get his breathing treatments but in the interim am super thankful that he typically responds so well.
Once we arrived, there was a large number of medical staff waiting to meet us. We answered lots of questions and Connor was put on the high flow oxygen and given some medicines to help encourage him to sleep. After some initial complaining about the administering of the oxygen through the nose, he fell asleep holding my hand. There was a FLURRY and I do mean flurry of activity through the early morning hours and are super thankful that he was able to stay asleep while vitals and oxygen levels were checked.
He awoke in the morning and was feeling better. We were able to set him up with his Kindle and track down DVDs that the PICU provided to its patients. There is definitely some comfort in knowing that Connor was definitely going to get better. On my quick walks to stretch my legs and use the bathroom, I was able to see a lot of patients that there was a good chance that they didn't walk away from their hospital bed without significant issues or at all.
Connor had breakfast and after some sassy conversations (read: Connor was getting better) over the available DVDs, I encouraged him to fall asleep and he did.
I left the patient with his dad and the plan was for me to get some rest because clearly there was no sleeping with all the noises of the machine and continual checking of stats. I would then get Jackson and we would go down to visit with Connor, which the PICU allowed for us since they were twins and we promised that Jackson would be calm.
To give him some normalcy, we grabbed a Kona Ice with some of his friends and then hurried down to the hospital as I was anxious to get back and Jackson really wanted to see his brother.
Upon arrival, we got the update that they were hoping to remove the nasal cannula delivering the oxygen after dinner because Connor was doing so much better!! They had already reduced the size of the cannula because it was irritating him so much when he was awake. Jackson got to give Connor lots of hugs and kisses before we left and they watched New Hope since they are obsessed with Star Wars.
After dropping Jackson off, I got to the hospital and was informed that the plan was to discharge Connor right before noon. He had weaned off the high flow oxygen around 7 p.m. and was given breathing treatments through the night in an effort to push them to 4 hours apart. The timing couldn't have been better. He was so ready to leave the hospital and we couldn't wait to get him home.
Before we could leave, Connor's IV drain needed to be taken out. This could have been construed by Connor as the WORST thing that could have happened to him. Taking the tape off took almost a half hour. He was second guessing every bit of what was going on, which totally confirmed that Connor was back. It was so irrational but could easily be linked to lack of sleep too.
Finally the tape is free and he is officially discharged.
We can not say enough about the care given at the PICU at Johns Hopkins. The staff is attentive and there is a one on one ratio with nursing staff throughout the day. It was so comforting to know that there was one person designated to our patient and that he was getting their best. The picture below is from a couple days after and show all of the monitors that were attached to him. He was just as upset about getting the sticky stuff off but eventually calmed down when I showed him how easily that olive oil would get it off. Connor at all times is ready to take a deposition, which is one of the things that we love the most about him!! And, thankfully, he is on the mend.
We left the hospital with what we still believe to be pneumonia although there was no fever, which is one of the main components of a pneumonia diagnosis. There is a definite plan to step up our administering of medicines to Connor as I believe freshly cut grass at soccer and a slew of germy birthday parties and the start of school collided on him and his immune and respirator systems couldn't catch up.
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