Just like clockwork, Paul is leaving for a business trip and Coleson goes into emergency surgery. Let me first say that Coleson is such a tough dude. We are always surprised when we walk into clinic and they hit us with some bad news since most of the time you wouldn't know it from the way he acts. He had recovered from his last drop in Oxygen sats well, but started to have a dry cough on Saturday. Back up 2 days earlier and he sounded great in clinic and his sats were still high 90s. Fortunately we have a very thorough Dr. and he was not merely satisfied with the fact that he sounded good, he wanted to get to the root cause of all his coughing even though at that time it had disappeared. So Thursday he ordered a more detailed CT scan... which Coleson handled like a pro. Typically little ones don't stay still in the machine, but he did so good. I hadn't heard anything by the weekend so was feeling pretty good that nothing remarkable showed up and Peyton and I enjoyed a nice weekend with our old neighbors and her first best friend, Sammy and Bree. It was a quick visit but we did have time to see Disney's Live Pirates and Princess, courtesy of the RMH on Sunday morning.
So we walked into clinic on Monday at 8:30 and the Dr. told us that the CT scan revealed some fluid around his heart (periocardial effusion) and he ordered an echo for 10:00. Plus late Friday he had gotten results from his lab work that he tested positive for Adno virus (though not a high cell count of it) and we were scheduled to see a pulmonologist at 10:40. Well, we never made it to pulmonology because the echo revealed enough fluid around the heart to schedule immediate surgery (Periocardialcentesis) As a side note, I am going to have to re-write the ABC's of MPS as we've added several new words over the past 90 days.
So we got readmitted to the BMT ward, in the same room as our last stay, and prepared for surgery. In the meantime we met with all kinds of Dr.s & Anesthetists to review the procedures, risks, etc. The cardiac surgeon even said, that he wouldn't know by the way Coleson was jumping and laughing that his heart function was being compromised. So Coleson went into surgery and Paul left for the airport and waited for me to confirm that everything was OK, about an hour later I was able to do. They got 6 ounces of fluid from around his heart and put a drain in there so any additional fluid would be able to drain out. We've gotten another 6 ounces in the past 24 hrs. Just to give you a comparison, it takes 9 hrs of his G-Tube feeds to equal 12 ounces. Needless to say that's a lot of fluid around his little heart! He's been sleeping pretty soundly for the past few hours so not sure if anymore has built up. Usually a lot drains when we move him which we try not to do since he's in quite a bit of pain.
We are in wait and see mode now. We are waiting for the fluid to stop draining, waiting for the adno cultures to come back to determine next steps. It could be as simple as do nothing if adno comes back negative, or if it comes back positive, to take him off his immuno-suppressent meds early (which is what is used to prevent Graft vs. Host disease) and hope his own immune system can fight off the infection, or put him on an IV anti-viral medication which unfortunately can damage the kidneys, sometimes to the point of requiring dialysis. I don't like the sound of either option so am hoping the adno virus cultures come back negative and the earlier labs had gotten contaminated.
Meanwhile, my baby boy needs me and I am trying to just focus on being mommy right now and just holding him so he can be as comfortable as possible. I have been trying to do too much and yesterday scared me back to the reality of this awful disease and the risks associated with it. He needs me right now more than ever as do I him. Please keep him in your hopes and prayers. He needs to feel the love and support from his worldwide family.
Tuesday, October 22, 2013
Tuesday, October 15, 2013
Where do I begin??? A lot can happen around here in 11 days! First, last Monday, Coleson reminded us why we are all here... His Oxygen level was at 82% when we were in clinic. After much hesitation, the dr. agreed to not admit him as long as his oxygen levels responded to an Albuterol neb treatment...which it did, although only temporary since Albuterol is only a fast acting, short lived drug. So after a long day at clinic, we were sent home with 4x daily Albuterol nebs, steroids and azythromycin, yet another antibiotic. We had to check in daily for oxygen level sats. On Tuesday, his oxygen was in the mid-80s, by Wednesday low 90s and by Friday mid-90s. Yesterday it was 98% and his lungs never sounded better,which you would think I would be ecstatic about, and I was, briefly. However, since he did respond to that treatment, the Dr. Informed me that he is still very cautious right now. The positive response could be for 1 of 3 reasons: 1. It could be because it actually took care of a lingering virus or bacteria, 2. It is only temporarily "masking" a bacteria since azythromycin can do that or 3. That he could have a localized GVHD (graft vs. Host disease) to the lungs. It just happens that steroids and azythromycin is the treatment for GVHD of the lungs, with the exception that it is in higher doses and for 6-9 months! Needless to say, I can't imagine giving him steroids for that long! So we are on close watch right now and have to take him back on Thursday to check his sats and see how his lungs sound.
Otherwise I had a great week with visits from Brendon and Sandy and we finally got to eat at "The Nook" a famous burger dive. They all said the burgers were the best! I scored big time at Bingo ( which I never do) and the best part of my week was when I opened my door on Friday evening to see my AZ friends Kim, Suzette and Stefanie! They totally surprised me and stole me away for the weekend. Thank you Brian, Chris and Richard for taking their kids for the weekend and Paul and Rachel for taking mine, so I could shed my mursing and mommy duties and just be a "girl". I actually enjoyed shopping again. Also thanks to Laurel who kept up the rouse. I did suspect something was up, but did not expect to see those 3 at my door. We went to the Diercks Bentley concert, toured the sculpture garden, shopped at Mall of America and shared some great laughs and some tears too!
Out return date is still a bit tentative with this new possibility of GVHD but are still hoping to go home on November 1st.
Sunday, October 6, 2013
Happy Birthday my beautiful baby boy! You have been through more in your 2 years of life than most in their lifetime. You have amazing spirit and determination. I promise to be by your side every day of your life as long you promise to be by mine the rest of my life!
Coleson had the best birthday he could have had. Not necessarily from a health perspective but from a social perspective. The Honeywell Minneapolis Law and Contracts team (led by Janna) hosted the RMH dinner Friday night and put on a little birthday party for Coleson complete with an awesome birthday cake and presents for both kids!
I am grateful to at least be in a city with lots of friends near by! Thanks Laura, Barry, Tim, Jodi, Rebecca, Janna, Debra, Sue and Michelle! Fittingly, the kids got his and her airplanes along with books and a phone.
The last week was pretty full. Just as I feared, Coleson's congestion and cough returned within days of ending steroids. He stopped eating so we are back to g-tube feeds and vomiting...
Sunday we met my friend Nicole and her family at the White Bear Lake Apple Orchard. We picked pumpkins, went thru a corn maze and on a hay ride thru the orchard,minus the hay.
Sunday night Telma and Sam stopped by for a quick visit and to drop off some pictures that the kids made for Peyton and Coleson.
Monday I threw out my lower back. By Tuesday morning it was worse so I went to the Drs. I swear Paul, Peyton and I have been to the drs. more in the past 4 months than ever..we'll maybe not me. The dr. Put me on muscle relaxers and it is slowly getting better. On a side note, after a small adjustment to my pacemaker, it appears that is working just fine. There was a setting that was limiting my sinus node to beat fast enough to support my running.
Another Hurler family is here for a couple weeks while their son (6yrs.) is getting knee replacement surgery (I told you this doesn't end with the BMT!). They have 2 kids with Hurlers, their youngest daughter is 18 months old and is 1 year post transplant. Since they knew within 2 weeks of birth that she had Hurlers they were able to start her on enzyme right away and she had her BMT at 5months. boy does it make a big difference! Not to lessen the hardships she will have in life but hopefully it will prevent her from having as many side effects and surgeries. Only time will tell. It seems odd to me that someone who is 6 months younger than Coleson is already celebrating 1 year post BMT. They are a really nice family and I again appreciate being able to talk with another family..it is so helpful. Thanks RMH for creating a place where that can happen.
We are within 30 days of going home as long as nothing prevents that from happening. We are still trying to figure out the logistics. Coleson hates wearing his mask, though we are trying to use it more and more, so a plane ride seems almost impossible but driving home is too risky for him. Paul is looking into Angel flights but Peyton would not be able to fly with us. We'll figure it out cuz winter is coming to Minnesota and I do not want to be here when it hits! It is a beautiful (but chilly) fall!