Albuterol

My sweet boy, actually he was not sweet at all the albuteral made him a lunatic!!

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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.

Prayers

Hi everyone, I hope your Christmas was wonderful!! I need your help and prayers!! In June I had someone contact me from Team Kris, she was searching for a bone marrow transplant and couldn’t find a match. So in August she had a cord blood transplant and now her body is rejecting it! Kris’s husband Ken came by our bone marrow drive and thanked me personally for holding it! I was so thrilled he was their and took the time to come by! Kris is very sick and needs our prayers so does her family!! Please please give her the strength to keep fighting this terrible shit! Pray her family, her husband and children can stay strong for her!!! Here is a link to her blog!!! Thanks

C

http://kris-miner.com/2012/12/25/december-25-2012-poking-holes-in-the-darkness/

Angry,confused and very sad!

In September I had a gentleman contact me about Bo. His name was David, his grandson Cooper was fighting his ass off because he has IPEX.. He is a very very sick baby he was Born in July and been in the hospital ever since! 15 days ago he started the process for transplant and yesterday he lost his fight! He passed away at 8:30 yesterday morning!! I am so sad for this family and I can’t even begin to imagine how they are feeling! I am so angry that this existed and his older Brother will never know how much of a fighter this little boy was!! It makes me sad that he never got to go home and his little body hurt everyday! I have never met Coopers mom and dad but, I want them to know how amazing I think that little boy was, how he fought his ass off until his little body couldn’t take any more! I am so very sorry for their loss my heart is breaking for them! Please please keep them in your thoughts tonight, and all of the families who are going to sleep with out their babies tonight!! Ugh this weekend sucked!!!

C

When life throws you lemons you make lemonade right?

You know that saying when life throws you lemons you make lemonade? Well, Bo has been in the hospital since Sunday! We hate winter it blows! He has been sick since his ear tubes were removed, with everything you can think of! So 2 weeks ago we had an appt with immunology and had some blood work done! Yesterday we got those results, it shows that Bo produces no T-Cells, what does this mean? I am not 100% sure, but he can’t fight off infection! So they don’t think IVIG is going to benefit him, actually since he is IGG, IGA deficient it may hurt him?? So we are consulting with Denver children’s and Cincinnati children’s to see if the only option is transplant?!? This is very rare and with everything else they have no idea how to treat it or handle it along with everything else! So for now please pray we get out of here soon and pray for us to find a Dr that understands the difficult kid that Bo is. We are so lucky to have these amazing nurses who keep me from losing my mind and are so wonderful to Bo! So thank you!!!!