Good afternoon. Sending updates on this past weeks Pittsburgh visit. There were so many positive things that made this trip so amazing. We had so much favor from day 1 and throughout the trip.
-Went to pick up the rental car the morning when we were leaving. They didn’t have any mid-size cars so we were upgraded to an SUV with no extra cost AND told us we could bring it back a day later than we planned so we didn’t have to rush back before they closed.
-We didn’t know where we were going to stay because the Ronald McDonald House doesn’t let you know if they have availability until the morning of your requested date. I called them Tuesday morning and they said they had just received word that a family would be leaving and we would be able to stay there for the 2 days. So we didn’t have to find a hotel at the last minute. The drive was about 5 hours.
-Wednesday morning was the ENT appointment. Kendall couldn’t have anything to eat after 11am for the cat scan. We are in the ENT office and the doctor comes in and tells us he never received any records from ENT in Detroit so he could only go by what we told him as far as her history was concerned. I was so pissed because I know exactly what happened. Those records were supposed to be sent to Pittsburgh in March by the previous coordinator that we had but of course she didn’t follow through. Another reason I am so glad we have a new coordinator because she always follows through with what she says she is going to do and always communicates with us. So we sign new paperwork to get her records sent over and I personally called our ENT nurse in Detroit and she was going to handle it. The doctor said his recommendation is for Kendall to come back to Pittsburgh for an airway dilation/laser and/or balloon procedure. No matter what her previous Drs report her airway looks like, they want to do their own evaluation so they know the exact size prior to transplant. With that being said we have to go back for that procedure and stay overnight in the hospital. Three weeks after that we head back there for a follow up appointment. There were no available appointments until August 1st so she is scheduled for that date. If there is any cancellations they will call us because they want to do it sooner if possible just in case she is able to get the heart transplant before August. Obviously they would rather do the dilation procedure ahead of time so that she can come off of the ventilator to prevent further swelling that will increase the risk of her not being able to come off of it as soon as possible.
-That morning I received a phone call from the transplant coordinator and she told us that Kendall might be able to have the MRI that they initially wanted(the one with the iron contrast) instead of the cat scan. She said she would call back and let us know.
-Since we didn’t hear anything by 2pm we went to the registration department for the cat scan. Person registering us didn’t have any order for an MRI so we figured that it wasn’t going to happen. The child life specialist showed up just like she promised to help Kendall get through the IV and procedure. While we were in the waiting room a doctor came in and said he was the Cardiac Radiologist/Anesthesiologist. He said he never works on Wednesdays(remember they told us they only did cardiac tests on Tuesdays and we couldn’t get in until July). He said he “just so happened” to come into work that day because they had a busy schedule and he volunteered to stay so that Kendall could have an MRI. We were so happy. Happy is an understatement. Things just kept working out in our favor.
-Everyone was under the impression that Kendall needed to have general anesthesia for this so that is what they were planning. What we requested and understood was that she was going to only get mild sedation just so that she could get through the test. There was no way she was getting general anesthesia after what ENT just told us.
-What ended up happening is that they gave her some nitrous oxide while they put her IV in and that helped a lot. They gave her a lot of reassurance and coping skills that she could do while she was in the machine because they really didn’t want to sedate her if they didn’t have to. She chose a movie to watch, they gave her headphones and goggles to see the movie out of, and she did great. They let me stay in the room and let me rub her head from time to time just to let her know someone was there.
-When she came out of the machine she said it was still very loud but the movie she was watching made her laugh and that’s how she got through it.
-We didn’t see any other doctors after that so I assume that they will call us after the holiday and give us the final decision.
xoxoxoxoxoxoxoxoxoxoxo
Cewanda
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