May 30 – 3:45AM – We must be crazy!! Bill was not able to take the time off work, so just the boys and I were going to visit Illinois. Bill dropped us off before the sun came up.
The nice thing about an early flight is that is was still so early when we arrived in Illinois. And then our three suitcases were the first ones to slide onto the carousel. It was a miracle.
We got a fancy ride to Gramma’s house!
Cheers!
The hour long ride was a perfect time to take a little nap
I don’t have pictures of all of the silliness in between, but the boys were so super excited to be there and to see Gramma and Gizmo. They were bonkers! At the end of the day, they were all wiped out, especially the dog!
The next day was time to spend with cousins! They all gathered in the TV room to play Minecraft.
Brendan was so excited to be able to go in the hot tub. He made a plan that he would be using the hot tub every day!
Gramma’s got a new glass shower door and Trevor really liked it 🙂
I had to make sure that I did the important update. Brendan is home!
On the last day in the hospital, he proved that he can still take a bath in the wash basins. (He wasn’t allowed to shower and get his PICC line dressing wet)
We are out of here!!
As soon as he got home, he requested a bowl of macaroni and cheese. The hospital food is actually pretty good. Brendan ordered lots of salad, BLT sandwiches, and chicken legs. He said their Mac was gross and plasticky.
He had a solid night and a restful day. He is going to go back to school tomorrow! He is going to stay on antibiotics for a while to make sure he does not get reinfected while he heals. He is just so glad to not have any IVs and to sleep in his own bed. (He says also to be able to go potty without someone having to ‘weigh’ his pee)
Twelve nights in the hospital so far and not really an end in sight. He has now been inpatient longer than when he had his heart surgery.
The consensus among all the doctors is that he was exposed to the haemophilus influenzae bacteria and got “community acquired pneumonia”. There are many kids in the hospital now with the same illness. They all believe that getting him to the ER when I did was lucky, all of his other issues just kind of added up to the pain that Brendan was feeling. They were able to start the right antibiotic immediately. The Infectious Disease Team doctor said that this bacteria could have made him way worse very quickly if I had waited longer. Brendan is improving slowly, but it will take months before he is back to 100%. We just need to figure out when he can come home. They suspect that the infection is the cause of his low albumin, but they will not be able to investigate that until he is better. Bill and I continue to alternate sleeping at the hospital or sleeping at home with Trevor. Bill goes in to the office as much as he can. Now that school has resumed, it will mean Trevor won’t have to spend so much time at the hospital.
Several doctors and nurses say that Brendan’s scans and bloodwork don’t match what they see when they examine Brendan in person. He has several spans of time through the day when he seems pretty well and that seems to be when the doctor always comes in. He always has lots of time where he is crying, sore, and just wants to go home.
I don’t usually take pictures like this, but sometimes the photos on the blog don’t paint a complete picture. Brendan cries a lot every day from all of the handling, poking, disturbing his sleep, and just plain soreness he feels everywhere.
I put this video in just to show how swollen he was. He was like a marshmallow version of Brendan
He has received several big wish list items he wanted. That puts a smile on his face still.
Don’t mind the mixing of the super hero universes, it won’t unravel the space-time continuum. Much.
Trevor gets very upset seeing Brendan in the hospital, and can’t handle when Brendan cries. But when Brendan is in a better mood, they still find ways to be silly.
Brendan loves his salad.
I am shocked at how well he eats it. It has to be “Newman’s Own Ranch Dressing”
We don’t want him stuck to the bed letting his muscles atrophy. He has to walk as much as possible. At least he has a nice view and can spend some time in the chair.
He made a little video to say hi to his class. His teacher came to visit him too.
Lego is keeping him busy. He just has to take lots of breaks. Here he finally has two hands to build. His right-hand IV no longer functioned and had to come out. They put a new one in his left forearm right after I took this picture.
He was drawing an owl on the door each morning to keep track of how many days he had been there. After he had so many, he just gave up. I have not been able to tell him that he missed his Lego competition and his favorite owl picnic. We have all just lost track of days now.
Video chatting with his brother – having deep conversations of course.
He is getting xrays and echocradiograms daily watching the fluid around his lungs. It seemed to be getting worse and the team decided that a chest tube was necessary. He went down to radiology Tuesday afternoon. While they did the chest tube, they also put a PICC line in his right upper arm.
The chest tube is on a slight suction to drain the fluid. It is uncomfortable.
Lots and lots of breathing treatments. He hates the taste it leaves in his mouth, but he is getting better at just doing the “puffs”.
The nurse that had to take out the IV and put in a new one surprised Brendan with another Lego set!
He is exhausted
While school was closed, Trevor and I built a parachute for his army men out of tissue paper from the gift bags Brendan has received. It is a good thing that the 9th floor window doesn’t open!
Brendan’s teacher brought him a box of “Bunchems”. Brendan builds a mutant blob and sets it loose on the hospital. Quarantine this!
Trevor shows how Bunchems look and act like cholla cactus.
Quote from Trevor, “If this was real cholla, I would be like ‘Ow! my wiener!'”
One of Brendan’s friends from school came to visit.
It was good because they were able to take Trevor out for some fresh air while Brendan got the dressing changed on his PICC line. Trevor would otherwise hide in the closet with headphones until Brendan was done screaming.
Lots of listless, tired waiting….
We get toy loans from the playroom. They brought in magic tracks.
Trevor does not just make ovals
A few friends visit
A respiratory tech insisted that Brendan wear a nasal cannula instead of a mask for oxygen. He complies in his own way.
Puff!
Trevor and I hung the parachute in the window and then went outside to see if we could see it. We went to the parking garage roof across the street. If you are facing the south side of the hospital, wave toward this window.
Bill was signaling us with a flashlight. We could not see the parachute.
Brendan gets a turn with the magic tracks.
Today Brendan built another Lego set that just came in the mail from Gramma. He has wanted this one for a while!!
Brendan finally had an appetite. He ordered a BLT.
Final update as of Saturday, May 5th – the chest tube drained only 4ml of fluid in the last 24 hours. They did an xray and can’t tell if it actually got all of the fluid so they sent him down to imaging for a full ultrasound. We will hear the results in the morning. If the fluid is gone, they can pull the tube.
The IV nurse also thought Brendan’s arm looked swollen around the PICC line. They did an ultrasound of his arm as well to make sure that line was OK. He was getting another Albumin transfusion and still is on Lasix to chase the fluid.
Tonight, Trevor has a low fever and is so sleepy and won’t eat. I hope I know more tomorrow and we can get a light at the end of this tunnel to look forward to.
