October 10, 2009

Voice from the Past…

Posted in Health, Hospital Life, Itty Bitty Baby News, Transplantation at 10:03 pm by bk2nocal

I realized that I have been derelict in posting here…so, I wanted to catch up a bit.  But, my mom went into the hospital today for high potassium levels and erratic pulse and EKG, so I’m going to post my last carepages update here at this blog…this is from September 29.  M has since not only got out of the hospital, but we were officially “discharged” from LCPH and the RMH this past week.  We are still moving stuff out of the RMH, but will hopefully complete that process tomorrow and be living with my sister in Davis until we find a place to live.  The title of this Carepages post was “The Year of Living Fearfully”:

That is what I feel like we’re doing right now – having the year of living fearfully. Everything tends to be scary when you’re unsure if your daughter is in rejection or not in rejection, getting some illness due to immunosuppression or not getting some illness due to immunosuppression, at the right level of medications or not at the right level of medications. There are so many “what if’s” running around your head all the time that when something goes wrong, it can feel like the whole world is coming down on you. That is what happened early on Sunday morning…just so you don’t have to live fearfully until I finish telling the story – all is fine now with Mackenzie…

On Saturday, Jason brought Mackenzie to my sister’s in Davis to visit since I had been sick in Chico the entire week before that. I drove down and we were going to stay the weekend there and then go our separate ways for another week of work. But, Mackenzie had other ideas. She was a little fussy all Saturday night, restless instead of restful sleep, a little warm (but it was hot in Davis that day/night), etc. At 4 a.m. she woke up for a third time, I fed her a little and she remained fussy, and then she threw up all over (a relatively rare occurrence now that she has a new heart). We took her temp and it was 101.7, so we called Stanford and they said to drive her in to the Emergency Room there and they would check her out. So, we left my sister’s and drove the hour and a half or so to Stanford. Mackenzie slept most of the way, but the one time she woke up, she dry heaved/spit up a little and seemed to be in labored breathing afterwards. It was pretty scary, but luckily, we were within 20 minutes of Stanford when that happened. I think both Jason and I were in full panic mode by this time, and our hearts dropped when the labored breathing started.

We got her to the Emergency room and the cardiologists on call (Drs. Lewis and Hollander – both of whom we know quite well after being in the hospital for so long) came in almost immediately, said she looked pretty good and they would start running tests on her. The fact they said she looked pretty good just goes to show how much we have come to expect Mackenzie to be healthy already! To us, she looked horrible! I guess this is a good thing though! We don’t think back to what she looked like before the operation…they both said “Wow, she has gotten so big – she looks like a baby now! Good color!” They began drawing blood, etc. and put her on the machines to track her vitals.

We were in the Emergency room that day for about seven hours waiting for a room on the third floor to open up. They swabbed her for flu/respiratory virus, tested her line for infection, etc., etc. They finally gave her Tylenol (I think this was just a mistake on their part – they may have thought we had given her Tylenol before we left home) when her temp hit 103 and within 30 minutes, she seemed to be feeling better, her temp was going down, etc. So, lesson learned…we need to have some Tylenol at home to give her when she runs a fever.

They did an EKG and when we finally got a room on the third floor, Dr. Hollander did an echo and all looked good with her heart. They think it was just a “normal baby-thing – they get temperatures or stomach bugs every once in a while,” but with a heart baby, everything normal becomes a huge scare! Hence, our year of living fearfully. I am hoping that after a year, this fear will somewhat subside. I think its made worse right now by the fact that we don’t know where Mackenzie is rejection-wise right now. It will either be made better or worse by the results we get this week. It is good that her heart seems to be functioning fine, but its still a constant worry that she could be in rejection and not show any real symptoms.

Mackenzie should be getting out of the hospital today as long her cultures from her line come back as clean. It seems that this was just a normal, baby thing and we should not be overly concerned. She will still get her biopsy on Thursday and we will know where she is rejection-wise on Friday and we will either be settling in for a longer stay at the Ronald McDonald House and figuring out how to deal with the rejection OR (and this is the one we’re hoping for), packing to move out of the RMH and quickly finding a place in Chico to move into! Either way, it will be nice to know.

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2 Comments »

  1. robin borrowman said,

    i AM ENJOYING YOUR BLOG. OUR DAUGHTER IS NOW 6 MONTHS AND RECIEVED HER NEW HEART ON AUG 14. I AM COURIOUS AS TO WHY YOU HAVE TO RELOCATE FOR A WHOLE YEAR? IS YOUR HOME REALLY FAR FROM THE TRANSPLANT CENTER. I KNOW THAT FAMILIES FROM EAST AND WEST COAST CANADA FLY BACK EVERY MONTH TO TORONTO FOR CLINIC. OUR DAUGHTER HAS HER 2ND BIOPSY ON OCT 30. YIKES! i AM FRUSTRATED BY HOW DELAYED P IS IN HER DEVELOPMENT, SHE REFUSES TO MOVE HER HANDS OR TRY TO GRASP. SHE IS VERY CAUTIOUS OF STRANGERS AND VERY CURIOUS OF OTHER CHILDREN. SHE IS STARTING TO CLAMP HER MOUTH SHUT WHEN I APPROACH WITH A SYRINGE OF MEDS AND IS NOT ENJOYING THE INTRODUCTION OF SOLIDS. HAVE YOU SENT A THANK YOU LETTER TO YOUR DONOR FAMILY? I THINK LAWS ARE DIFFERENT IN CANADA, WE KNOW NOTHING ABOUT OUR DONOR AND A LETTER WILL BE DELIVERED ANNOUNMOUSLY FOR US AND THEY CAN CHOOSE TO RESPOND. FYI- I KNOW OF A 32 YEAR OLD HAIR DRESSER HER RECIEVED HER HEART AT THE AGE OF 5 IN CALIFORNIA. SHE IS TOTALY OFF MEDS AND DOING FANTASTIC.THINKING OF YOU. BEST OF LUCK.

    • bk2nocal said,

      Robin – Thanks for writing. So sorry to hear that your daughter had to have a transplant and very sorry to hear that she is having some developmental issues. We have been lucky with Mackenzie – she has been doing pretty good with physical therapy. Her biggest issue so far is gaining weight, but we’re hoping now that we are living in a stable place maybe that will be easier.
      We did not have to live away for a year. We only had to live in Stanford for four months, but we thought with Mackenzie being so young it was going to be much longer. But, we are now in a home back in our hometown – actually moved in yesterday! We should definitely keep in touch. You can email me at bk2nocal@gmail.com anytime!


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