I know many people are worried and wondering about Brendan’s current hospital stay, so here is everything there is to know. This will be very long. Partly because I type too much, and partly because it is very complicated and hard to believe and I want to get it all down while I remember it.

First, a little background. Anyone who has been around Brendan knows that he is active and silly. You can’t slow him down. And he has a killer sense of humor. For the past few weeks, he has had a little cough/runny nose. Almost everyone else I know does too – it is a pretty bad allergy season and the weather has been nuts. Big 40 degree temperature swings, lots of blowing dust, and pollution advisories. I didn’t think much of it.
He has also had a little constipation. Considering that he still relies heavily on formula through his g-tube, he has a pretty controlled and balanced diet. But outside of formula, his number one food choice is cheese and whole milk. As he eats more solid foods, being stopped up a little didn’t seem like a major issue either.

Sunday the 22nd, we attended a picnic put on with Phoenix Children’s Hospital. It was organized by families with kids that have single ventricle hearts. Many families that came still had babies in the hospital or at home waiting for their next surgeries. Brendan was a celebrity. People were so happy to hear his story and about his medical history and see what an awesome kid he has turned in to. He brought hope to many. Several of his doctors from the ICU were there and were amazed to see how far he has come too.

It was a hot day, and we were outside in the sun a lot. Brendan spent a good solid hour throwing a football with another family. By the end of the picnic, he was totally worn out. He wanted to be carried to the car, but this isn’t unusual for him.

Monday morning was a school day and we usually get up at 6:20 to get ready. Just before 6, Brendan walks in to my room crying and holding his chest. He said his right armpit was hurting so bad. I try not to freak out because my heart kid is having chest pain and I try to be logical. I think of the football and maybe muscle strain. I check him out and give him Ibuprofen and heat and ice packs and calm him down. It seems to help. We get Trevor up and ready to go. I even try to talk Brendan in to going to school and just taking it easy. But he is weepy and worried and still has pain so I agreed to let him stay home and I plan to take him to his pediatrician. His belly is also huge and distended, I assume the constipation is worse so we can talk to the doctor about that too.

We drop off Trevor and I am on my way home from the school and Brendan doubles over and is crying so hard. He says his armpit and now his back hurts. We didn’t even make it to the house, I headed straight for the ER at Phoenix Children’s.

Trying to explain everything above, plus Brendan’s history to the emergency staff is impossible. It could be so many things, I want them to have all of the information. He hadn’t had any fevers. He had been sleeping so well. He loves to go to school. He was fine the day before and at least this time, I have some doctors that can back me up!

The ER doctor asks for bloodwork and an IV to give fluids. The ER nurse tries for ten solid minutes in both of Brendan’s wrists to get blood and ends up with nothing. Another nurse tries again. Nothing. Fail. The IV team specialists come and try again. Brendan is acting like he is possessed. He is screaming. He keeps telling them to stop. He yells that his arm doesn’t bend that way. They are stretching him. They are breaking him. He kept saying. “Stop! I mean it! Put a band-aid on it now!” No luck. They manage to draw enough blood for a culture but fail to get the IV in place. They move to admit him. He is exhausted.

We wait in the hallway for a while to get an xray.

The xrays show a small pleural effusion around his right lower lung. (fluid in the lining surrounding the lung). They also show lots of stool and tons of gas in his abdomen but not anything that looks like a hard blockage. They start him on Miralax to get him moving. They label him as having pneumonia. He starts getting a fever as we are waiting and is coughing now.

IV team comes back and tries again, this time giving him some Versed to help him be more calm during the torture. They get an IV in, but when they go to push fluids, it blows out.
He gets moved to a room on the sixth floor in a unit they call “Six West” or the Trach and Airway unit. IV team comes back with more Versed and manages to get an IV in his other hand. They start a broad spectrum IV antibiotics. They say he is dehydrated and say that is why they are having trouble getting the blood. They push LOTS of IV fluid.

He sleeps fairly well through the night. Tuesday morning, he is sad that he is in the hospital. He is very upset about all the bruises and band-aids from blood draw fails.

He is sore all over and when I try to get him up, he is swollen up like a water balloon. You can’t even see his little knees. I get the doctor(resident) and they explain that they gave fluids so quickly, he has edema that is not unusual and it will get absorbed and peed out soon. Moving around more will help. He has not peed more than an ounce since the day before.

The resident comes back in and tells me that they need to repeat the blood cultures. She says there may have been a contamination in the original draw and they really need to repeat it to be sure they are giving the right meds. Even though there is a working IV, the culture must be a fresh poke. Here comes the IV team again and some more Versed. His arms are a wreck so they start looking at veins in his feet. He is in a state of pure panic, even with the drugs. As I am holding him, he is screaming to stop and even says “Now you have to do this to my feet too?! What is this world coming to?!!” They get blood. I am livid.

Bill takes over hospital duty and I go pick up Trevor from school. This is where it gets interesting. I get a strange voicemail from a woman named Katie from “Public Health” that almost sounds like a spam call except that it mentions Brendan by name. I call back confused to see what it is. It is the Maricopa County Department of Public Health and Katie is a surveillance nurse. She was alerted by the hospital lab that Brendan had a bloodstream infection (Bacteremia) of Haemophilus Influenzae Type B, or HiB. Haemophilus Influenzae is a very very common bacteria that causes sinus and ear infections, pneumonia, etc. Type B is a deadly form notable for causing death from meningitis and bacteremia.
She interviews me about where Brendan has been, who he has been exposed to, etc. Children gets vaccinated for HiB and Brendan had all of his vaccines for it. So this is the real reason the hospital wanted to repeat the cultures. And why am I finding out about Brendan’s test results from the government before the hospital?!?!!?!
I am freaking out.

The attending physician visits Bill. I get SO insanely frustrated with the “telephone game” style transfer of information that happens between the lab, the attending, the residents, and the nurses. What gets to the family is not really ever the whole truth.
He assures us that Brendan does NOT have type B Haemophilus Influenzae, but rather a more common non-typed variety. It responds well to the antibiotic being given. He will be treated for the pneumonia. The best news is that the second culture came back negative and at this point (Friday), it still has not grown anything. A new chest x-ray looks no worse. The cardiology team does an echo. When there is blood bacteria, they look for “vegetations” or growths and damage on heart valves. The good news is Brendan’s valves look very good and there is no sign of infection in his heart.

Through the night on Tuesday, Brendan coughs a lot and doesn’t sleep well, but come morning he starts to feel a little better. They get him some Lego as a reward for all the pokes. He is still water-balloon Brendan but he finally starts to poop. Maybe it is starting to change.

I pick up Trevor from school Wednesday. He is feeling sad and frustrated and ignored. He is jealous of the attention that Brendan gets. Brendan’s whole entire class of kids each made him a get well card and bound them all in to a great little book. Trevor cries that he never gets things like that. He just can’t grasp what Brendan goes through.
So Trevor and I go to a bowling alley for a few hours and then get some dinner. Hand made Oreo milkshakes help.

This little diner is the first restaurant that Trevor ever went to as a baby. I show him pictures. Because I have pictures of EVERYTHING.

Brendan likes to order from food service. He orders chicken legs. He also shows off his winking. He has been charming all the nurses by showing them his winking skills.

Bill and I trade off again. I get Brendan walking around and in to the shower. He seems to feel pretty good. We had been taking walks around the halls but because of the blood culture fiasco, we are on total quarantine and he is not allowed to leave his room. He just gets to walk around in his room. His new Porg friend keeps his spot warm for him.

The 25th was the boys’ “half birthday” so Trevor brought him the Porg (that talks and bites) and a book.

Wednesday night, it is another downturn. He gets fevers again in the night. I am told that it is a normal progression. But Thursday he is still feeling awful. Still tiny amounts of pee, super swollen with edema. He is so sad. He is so upset that he might miss the special Lego Creative Crew competition that he was selected for on Saturday. We thought he might still make it. Now he definitely won’t.

This is a face Brendan only makes when he has pain.

Some very kind people from HopeKids stopped by to visit. Their cheeriness and attention helped bring him out of his slump. And they brought him a gift. He says they were so thoughtful to bring him some Duplos even though he isn’t a baby anymore. He says when he only has one hand to use, Legos can be hard.

So the attending doctor visits again Thursday with a whole new hypothesis. He says that Brendan’s blood protein (Albumin) levels are low. He explains in layman’s terms to me that infection/inflammation can cause blood vessels to swell and get leaky. The direction that the fluid leaks is highly dependant on albumin count. Most often fluid leaks IN to vessels. You pee a lot, can easily get dehydrated, need to take in lots of fluids. When albumin is low, fluid leaks OUT of vessels. So instead of peeing out, fluid is accumulating in Brendan’s legs and belly. The answer is to give him a transfusion of albumin and Lasix (diuretic). He needs to get the fluid out of his system. Because of the alert about HiB, the Infectious Disease team was also brought in to his case. The doctor from that area visited and did not have any other information to add. He believes the course of treatment is appropriate. I just had another call from the Dept of public health confirming that the new tests verified that it was NOT the type B strain and that the second culture was and still is clear.
The attending is still concerned that Brendan’s recovery has been moving in the right direction but is just slower than expected. His fevers are trending in the right direction but still occurring. They ordered an ultrasound of his gut and chest to look for anything else and a new chest x-ray. The ultrasound just shows what we already know, his abdomen is loaded with fluid from the edema.
He is going to get another albumin transfusion and more Lasix. The course of IV antibiotics should be done, but because of his slow recovery, they will extend the course for at least another dose. The antibiotic could be also causing more delay with treating the edema, but their number one priority is to beat the infection.

He is getting albuterol every two hours that is making him a little crazy. He has roller coasters of mood and wellness. He smiles, plays, walks and makes jokes one minute and he cries and moans of pain and fever the next. He will be devastated about missing his competition. He cries he just wants to go home.

He will be inpatient several more days at least. Then there needs to be an investigation in to why his Albumin levels are low in the first place. This can’t be done while he is ill. We have to get him better and then try to find answers. I know this whole post is probably overwhelming. That is coming through from how I am feeling. I don’t know how to tell it the short way.

Trevor and I are about to head back to the hospital to trade out again. The state-wide teacher strike means schools are closed. It is good for us to not have to worry about getting Trevor to school or how much Brendan is missing. I could write another post this long about the walk-out. I just really hope this gets the attention it deserves. I am 100% behind #RedforEd. Changes need to happen! Trevor spent the day with a friend yesterday (Thank you Amber, Blake, and Blake) but Brendan misses him so we are going to visit for a while. Amber said Brendan is like an episode of House. I couldn’t agree more, it sounds to crazy to be real.

If you made it this far, thank you for your concern and support. This is the way Brendan’s story seems to go.