Transfusion and Appointment

Wednesday was a REALLY long day! Alex and I left the house at 9:30 and got home around 6:00! Alex has been anemic for weeks (bordering on months), but he has been hanging just above transfusion level. Our labs on Tuesday revealed he had dropped below his transfusion level. After a call to our new hematologist she was able to get a transfusion arranged for the next day, but we had an appt secheduled at 12:30 which through a crimp in things! We had to be at the hospital by 10:30 so they could type and screen him and order blood.

At 12:30, after what felt like a really long wait....we met our new endocrinologist. He definitely was not a warm and fuzzy doctor. His bedside manner left a little to be desired, but he seemed knowledgable. We discussed the potential causes of Alex's hypoglycemia and he is in agreement with our endo in Houston that Alex can make and/or store glycogen because of his liver disease. He had some interesting ideas on how to make Alex more comfortable on his short break (about an hour a day) from feeds each day. We will be trialling his idea and see if we notice a difference. Unfortunately, there just isn't an answer to "fix" his hypoglycemia short of never unhooking him from feeds and/or TPN. We briefly discussed his size. His answer was that "he is not ok with Alex's height and weight", but that doing anything to address it would cause more harm then good. He also felt like growth was really far down our list of issues, so we will just leave it well enough alone for now.

After the appt, we headed back to the infusion center. The infusion center at Cook's is really neat. They have a huge Oncology dept and thus a really nice infusion suite. It is so kid friendly. They had lots of tables and chairs, a small playroom, recliners all with individual tvs and a video game area. Alex really like the infusion center. They were also able to run his transfusion faster then we ever have before. In Houston, they always run transfusions over 4 hours. At Cook's they base the rate off weight and we were able to run it over two and a half hours so that was a really nice surprise!
All in all a good day!

As for me and my little girl, we are hanging in there. They put me on prednisone to try and stop the vomiting. I had two glorious days where I felt really good, unfortunately I am back to vomiting several times a day. We see the doctor again next week because he wants to do an ultrasound and check on her growth since I haven't gained any weight.

Thanks for everyone who shared in our joy!
Ali

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Effective: November 2013

 

 

 

We are so excited to announce our exciting news. After lots of prayer and discussions with Alex's doctors, we decided to expand our family. We have had some people ask us if this baby will have Mito. The simple answer is we don't know. What I do know is that being Alex's mother is the best gift I have ever been given. I certainly haven't had the easiest road as a mother, but for every heartache we have dealt with there have been a million more joys. So we embark on this new journey with fresh hopes and the knowledge that whatever God's plan is for this new baby, we will be ok. Alex is ecstactic. He has asked for a sibling for years. I have always wanted more children.

 

However, apparently this little one doesn't want to make my life very easy at the moment. I have been diagnosed with Hyperemesis. Basically, I can't keep anything down. I am almost 14 weeks and have not gained any weight. For the last few months I have been spending 2 afternoons a week at an infusion center getting IV fluids in hopes of staying somewhat hydrated. My fingers are crossed that  get some relief soon. For those of you who have wondered if I have dropped off the face of the earth, now you know why! Alex has been incredible. He has been left to entertain himself for large chunks of the day while I am sick or sleeping so i can get some relief. Bruce has really picked up the slack in the evenings and on the weekends playing with Bug and eating whatever scraps he can find instead of home cooked food!

 

We are so grateful for the love and support you have each been in our life. We look forward to you walking the next leg of this journey with us.

Ali

 

 

 

PS- Just got a phone call from the doctor's office.....It's a GIRL!!!!!!