Good grief!

For the past 7 weeks Bo has, for the most part stayed, healthy! Two weeks ago that all changed. He and Brooklynn both had a cough which I thought was surely from the crap-ass weather. Cold hot, cold then hot, just pick a season- seriously! We saw the doctor two times in a week, I accessed him [his port] at home and started him on some antibiotics for a sinus infection and an ear infection. All is well? Nope, five days later *BOOM* it hit him hard. He had 104 temperature, 90% o2 stats, and a heart rate of 200, and landed us in the hospital!

We ran a ton of tests and he ended up having pneumonia. It took three antibiotics to help. He also had something new! His hemoglobin, platelets, white count and a few more were all low. Really low! His hemoglobin was 7, platelets 99 and white count was 2. Yep, when he goes, he goes big! He had an iron infusion and spiked a fever, not sure if this was bad timing for the fever or due to the infusion. He will continue to get these weekly until we figure out why his body is working in the opposite direction?!? Is this the IPEX? We don’t know! We have a lot of appointments coming up to figure this out. If all the tests come back okay, they will have to check his bone marrow to see if (or why) he isn’t producing white cells. That won’t be fun! At the end of this high dose of antibiotics he will have a bronchoscopy to see what’s going on in his lungs. Hopefully we will have some answers soon!

We have started a Super Bo Facebook Page. It’s easier to update on it when Bo is in the hospital. Find us and like it!

I have to say a few other things too. We are so blessed and lucky to have the people we have in our lives! I have no idea where we would be with out my parents, my in-laws,my sisters and my two sisters- in-law! They keep my family together. We work as a team! While we were in the hospital last week, John was out-of-town working. My three other children were taken care of by parents and in-laws!! They will never know how much I- we- appreciate them! Thank you!

To my amazing friends, thank you for the visits, the talks, my lunch shakes, everything!! I am so lucky to have amazing friends! Our community is unbelievable. Our teachers at our school keep my 2 older children safe and sound and make sure they are doing okay! They ask my kids and my niece how Bo is doing. It’s amazing all the way around! It makes my life so much easier. You guys will never know how very grateful we are!

C

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home…

Where do I start? This winter has been so hard on us, I mean really hard! Last Friday, January 11, Bo woke-up a little cough- nothing major- just a cough. As the day went on he was gradually going downhill, acting tired, acting different. By 2:00 he was hardly moving. I checked his temp and it was 100 which was unusual for him. He rarely has a fever but 100 was not terrible. By 3:15 he couldn’t walk or even get up. His temp was 103.9 and his 02 level was 70% (which is terrible) and he was also breathing around 80 reps a minute and I was kind of starting to freak out. Luckily, my father in law as at my house. I called the doctor and we were headed to KU Med. By the time we got to the hospital, around 8 minutes away he was in bad shape. When we walked in the door his 02 was 61% and the temperature under his arm was 104. They took us straight back and accessed his port and started pumping him with fluids…and from that point on it slowly got worse! They started him on albuterol every 6 hours at first and each day he got worse. By day 3 he was so bad he was on a continuous albuterol treatment which meant he had to keep a mask on for 15 hours. It was terrible. He was so sick.

By the 3rd day we knew he had pneumonia and RSV. They started him on 3 different antibiotics and told us if things didn’t get better soon they would vent him (!!!). I, of course was not at all ready for that, venting Bo is very risky because he already has a very compromised airway from being on the vent in the NICU and from all of his other stuff. (Hopefully with in the next month he is getting a bronchoscopy to see what is going on with his airway.) We were moved to the PICU where they gave him some magnesium to try to force his lungs to open up!

The PICU is where my brain went from “poor me” to “Wow I am so blessed and lucky it’s not worse.” I was able to lay next to my very sick baby boy, but he could still look at me and give me his little smile every once in a while. I could see how dark brown his little eyes were, I could hold him and comfort him the best I knew how. It was the most surreal thing I have been part of in a long, long time. I thanked my lucky stars every second because I knew it could always be worse. We spent 3 days in the PICU were Bo was finally starting to act a little like himself.

After 8 days in the hospital he was ready to come home. The amazing Cathy taught me how to access his port at home. It was scary but I did better than I thought I would.

I clearly didn’t give all the yucky details of our week, it was very long and very scary but right now he is okay and home! I have no idea what is next for us, we have a meeting with our team of doctors to see what we do next. Since Bo produces no T cells, IVIG isn’t going to do anything so why do an extra procedure? Not only that we aren’t sure if he will even be able to handle it without going into shock because he can’t handle the blood… We are hoping to have some sort of plan soon. Bo is going to have his tonsils and adenoid out but I am not sure when. Right now he has to get over pneumonia and get better. The doctor will not put him under general anesthesia until he gets the all clear. I will keep you posted!

Here is what I do need to say: THANK YOU. The support we have received is amazing. The people who support us are unbelievable, truly. Thank you everyone who has brought dinner and are bringing dinner. It helps in so many ways! Bo received an amazingly BIG box from some wonderful people far away at Paramount Pictures and, let me tell you, he was in love with it! Melman the Giraffe has yet to leave his arms. We couldn’t do the things we do without the help of all of you. My parents and John’s parents- thank God they all live here and close. We wouldn’t know what to do with ut them. Les, Lisa, Christy, Shawna, and Tina: I have no idea what we would do without your help and constant support, thank you!!! So many, many more I couldn’t possibly name them all so thank you!!!  Thank you! Thank you!! Thank you!!!

C

 

Update

Today Bo is holding his own! He spent 16 hours with the continuous albuterol on him and now it’s down to every 2 hours! He slept most of the day which was good for me so I could get some sleep too! He is still requiring oxygen, nighttime is the worst- not exactly sure why! Being in the PICU is very surreal, it’s very depressing, and I am so very thankful because it could always be worse! So please kiss your babies tonight, you never know what tomorrow will bring!!

I also wanted to say thank you for all of the support we receive. It is truly amazing and we are so grateful for all of your support and prayers!! To our Roesland Family thank you for the meals!!!

Bo: January 2013 update

On Friday (1/11) Bo was admitted to KU Med. Again. He managed to stay home for exactly one week after his last hospital stay (due to vomiting)  The virus, I think, took out every Macan kid at one point or another last week so Carolyn had a house full of sickies.

This time around Super Bo is having a really rough go of it. Here are the texts Carolyn has sent:

Saturday, January 12, 9:23 pm
Today has been rough! 103.9 fever, oxygen at 80 reps a minute. If tonight doesn’t go better they will move us to the PICU and then…I’m not sure what! His blood sugar is totally out of whack so they don’t want to put him on more steroids. Boo.

Sunday, January 13, 10:39 am
They are starting him on a second antibiotic hoping it will help. I am hoping today will get better every hour! I am hoping it’s better than yesterday!!! 🙂 It could be worse. Just glad we are here!

Monday, January 14, 8:10 am
Here is where we stand: last night sucked. The pneumonia has moved to his lower left lung. He was struggling so they did 9 albuterol treatments* on him. His oxygen is still 87% and he is on 4 liters of oxygen! As soon as they get a bed open they are moving us to the PICU. He is finally asleep! I just talked to our immunologist. She is canceling her 7:30 appointment and is coming here.

First time out of bed in three days.

Snuggles with Cousin Baylee.

 

Please send all the good thoughts, healing juju, and prayers you can to Bo. I will update when I hear more from Carolyn.

-kel

*Note:  albuterol is an inhaled bronchodilator (not a steroid) that is supposed to relax the muscles and increase air flow to the lungs (my daughter has asthma). That’s a lot of breathing treatments.

The Great Poop Watch of 2012: Update #2

HE HAD SOME MOVEMENT!!!

Here’s Carolyn’s exact text: Ok we have chunky poop!!!!!!!! Yay!! Surgery is postponed! They will do a slow g tube feed to see if he can tolerate it!

That’s the good great super awesome news.

But, of course, this is Bo and Bo likes to keep it interesting. Friday night his heart rate was low and the EKG results were not good. At 1 am Friday night/ Saturday morning Bo was moved to the PICU to have his heart rate monitored for an hour. His heart rate was still low but they moved him from the PICU back to his room. Carolyn’s fear, obviously, is that there is a rogue piece of the old port floating around his body. As of now they’re waiting for the cardiologist to place Bo on a heart monitor for 24-hours.

Hopefully, everything is okay. Hopefully, Bo will keep pooping and tolerate his g-tube feed. Hopefully all six Macans will be under one roof soon.

-kel

Mini update

As most of you know, Bo is back at KU Med.

Bottom line: our tiny super hero needs to poop as his intestine is totally impacted. In spite of having five enemas, two gallons of GoLYTELY, and 112 dirty diapers at KU Med (since last Wednesday), he’s still only pooping water and very sick.

Taking a break from his hospital room for a bit.

(On the upside: his port is still working!)

Carolyn is having a hard time getting updates up due to the internet security measures at the hospital. In the meantime, please send healing thoughts and prayers to Bo.

-kel