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
T+83 My Turn, My Turn
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
T+72 Happy 2nd Birthday (and 72 day re-birthday) Coleson!
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!
Tuesday, September 24, 2013
T+60 Starting to Count Down
Well we finally are past the half way mark and we are now starting to count down the days until we leave. As Peyton would say, 40 is less than 50, and 50 is less than 60, and 60 is less than 100! With the help of the steroids, Coleson's sats are back up into the high 90s. Though already just 1 day off he is starting to get congested again. While on steroids he improved every day and was eating like a little linebacker! We were totally off his G-tube feeds for a few days, however his appetite has slowed down today already so we will probably hook him back up. As far as the BMT goes, he is doing remarkably well. He has not had to have any transfusions and is staying in normal ranges. He is starting to grow the furry hair all over his body...Not even sure he will need the monkey costume I got him for Halloween! He has been a spitfire on the steroids and talking up a storm.
Peyton has the flu which makes life in this 1 bedroom living area a bit challenging. I am doing laundry non-stop and spraying Lysol everywhere. Even on Rachel and myself when necessary! Paul had to go back to Phoenix this week so he is fortunately missing all the fun! Although he is having his own fun fixing everything that has broken over the course of the last 3 months. Dead batteries in the car and tractor, broken well, leaking landscape water pipe...
Peyton continues to crack everyone up around here. We have had a pretty exciting week. First Rachel's friends Brian and Jenna came for a visit then Grandma and her 3 sisters came and then my friend Christina and her daughter came. She went to the Mall of America to ride rides 3 days in a row! She got a bit worried when we put her carseat in Grandmas car. I had to reassure her that she was not going to grandma's house! The Timberwolves held a press conference At the RMH announcing ths signing of Ronny Turiaf and we have video of He and Peyton playing ball. She is enjoying going to gymnastics again though I am afraid we'll have to miss tonight due to her flu. My co-worker, Dina, has her son In the same class. We also took Peyton to her first college football game. The colors were maroon and gold but it wasn't ASU...I can't believe her first game was the golden gophers! She has said a couple amazing things lately. First she was telling someone that her brother's curls were all gone. I thought she meant his hair, though it wasn't curly. A couple days later she was talking in the car and i realized she was saying "curlers" and what she meant was "hurlers". It's the first time I've heard her refer to Coleson's "owies" by name. It's hard for her to understand that he's been in the hospital for so long and isn't all better...for me too. She also was talking about getting a haircut-yes yet another, her 3rd since the end of July. She said she wanted to get her hair cut short so Coleson's could come back. I wish it was that simple. She is a good big sister!
I have been very busy as always trying to maintain my job, Coleson's schedule, Special time with Peyton and my sanity! Paul and I did get a date night when grandma and aunts were in town. Though Paul was a bit sick so it wasn't great timing. I am starting to go stir crazy in this little place and started packing on Sunday. It's amazing what you accumulate here! And we have been blessed with lots of care packages, cards, stars, etc. along the way. Good thing we are flying home and Paul is driving home as we will need the extra room in the Xterra for everything. We hope to be home the first week of November! Get those flu shots so we can hang out!
Friday, September 13, 2013
T+50 part II Never would have thought...
My mother earned her angel wings 33 years ago after a 3 year battle with cancer. I never would have thought that on this same day 33 years later, I would be sitting in a hospital room, discussing with doctors and specialists what to do for my son in order to raise his oxygen levels. Nor would I have thought that any other disease would be even more devastating to me than cancer. I never would have thought that I would rather be at MRR with the rest of my colleagues as opposed to being here.
Paul and I were interviewed tonight by the RMH for their yearly promotional video about our journey and staying at the RMH house... I couldn't do it without getting choked up..nor could he! I did however hold it together to say that fellow Honeywellers were going to be providing dinner for the RMH on Coleson's birthday, October 4th. Thanks Janna for organizing. Please keep RMH in mind when you are considering charitable donations. As I described it, the RMH is "priceless".
Thursday, September 12, 2013
T+50 Still not holding Oxygen
Well, We were back in clinic today and Coleson's Oxygen level is in the 80s...and that's even when he is awake. They were contemplating whether to re-admit him, just so they can keep a closer eye on him, give him blow by oxygen as needed, etc. They called in a pulmonary specialist to assess him. He suggested to put him back on steroids for 10 days and Cypro - some pretty hardcore antibiotics. I have to stop his g-tube feeds for 3 hrs. at each dose as it interferes. They hope by Sunday, he will turn the corner. If he worsens, they are going to go down his bronchial and clean out his lungs. I am hoping they won't have to do this as it sounds pretty serious and of course another sedation that in itself is so risky. Please send us your thoughts, prayers, love or whatever you got!
Monday, September 9, 2013
T+47 Home at last
Well it was a long 12 days but we are finally back home! On a good note, It did give me a chance to catch up some chic flics! Peyton and Grandma arrived last Sunday and brought some much needed smiles. Coleson just lights up when she's around. Over the past week we were just waiting for Coleson to turn the corner. He continued to get aerosol treatments and suction isn't ever 4 hrs. Round the clock. We thought we'd be going home by Friday but he just wasn't holding his oxygen overnight (dropping into the low 80s) relying on blow by air. They needed to ensure he could hold his own before releasing him. Finally last night he did. He dropped this morning but was able to bring it back up on his own. So now we have 3xs daily nebulizer treatments added to our repertoire! However we did come off TPN last week so that is a good trade. His G-Tube rate is 35mls/hr x24 hrs. He has also eaten a few things over the past few days like French fries, apple slices and juice.
I think Coleson knows he has to wear his mask now as he didn't fight it all all today or yesterday when we went down for X-rays.
Peyton and I had some much needed mommy/daughter time this past weekend. We went to my friend Nicole's cabin in Wisconsin on Saturday and went to a Hopekids carnival at U of Minn on Sunday. All the gopher athletes worked the event. Peyton bounced on all different bounce houses, rode ponies, raced cars and met "Goldy the Gopher". She is glad to be back at Old McDonalds! We started Gymnastics tonight. Something "Normal" for a change.
We are over half way done with our stay (hopefully). We are looking forward to some visitors over the next few weeks. Rachel's friends are coming next week, grandma and her sisters are coming as well. Also one of me best friends, Christina, and her daughter are coming late next week. We also will be saying goodbye to our next door neighbors and their Hurler daughter. We will be the only Hurler family at the RMH house.
It is the start of flu season so we have to be even more careful. Anyone who plans on seeing Coleson on thene t year has to get a flu shot. It's doctors orders. Another Hurler family who was here in the spring unfortunately did not get to bring their daughter home with them as she caught the flu and could not fight it. My "Murse" duties call..he's gotten sick 5 times since being home already!
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