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Paisley Long

Paisley Long

Thank you for visiting my page. Raising funds for CHD research is critically important and personally very meaningful to me. Please help us to fund CHD research by making a donation to my personal fundraising page. Together we can make a life-saving difference!

Sincerely,
Paisley

JUN
1

Paisley was born on 9/25/18 and was diagnosed with multiple health issues. She has multiple heart conditions, only one working lung, parts of her spine are fused along with some of her ribs. She has colobomas in both of her eyes, slightly effecting her vision making her sensitive to light. After being born at St. Joes, she was transferred to UofM Mott on day 2 of life via ambulance for closer monitoring. She went through MRI’s, a cath lab procedure (which ended with her heart stopping and needing a temporary pacemaker), countless echo’s, and X-rays. She stayed in the Cardiothoracic ICU for 18 days and on the regular cardiac floor for 10 days before finally being discharged home on oxygen and a feeding tube. She enjoyed the comfort of being at home for a few weeks. She was doing well at home starting to take bottles and doing better with her oxygen. In November she was taken to the ER for respiratory distress after spitting up part of a feeding. It was found that her home oxygen machine was malfunctioning and causing her to receive the incorrect amount of oxygen (causing distress), after several tests and 10 hours later she was able to come home with constant monitoring. She recovered quickly and was back to her happy self the next day. On 12/6/18 the doctors believe Paisley aspirated after an NG feed and was starting to have extreme respiratory distress and rushed to the ER, upon arrival she was intubated and put on a ventilator. While at the hospital she has had 2 cardiac arrests, one requiring compressions and epinephrine, the other just needing to be bagged along with several sedation medications. She was started on a paralyzing continuous infusion to keep her stable along with multiple sedation meds (which shows just how strong and tough she is). The doctors are still trying to figure out if this is all because of the aspiration or if her heart condition is worsening. Overall Paisley is such a happy baby and it’s so hard seeing her in the hospital again. Depending on her growth she will most likely be receiving open heart surgery in the near future and anything can help make her life and her families worries a little easier. Paisley is such a fierce little warrior and we know she will pull through this. Paisley was discharged on 12/30/18 and was home and doing well. we made it about 20 days until she started to develop some signs of either a cold or virus. We took her to our pediatrician and on our way there she started developing severe respiratory distress. We they proceeded to the ER at Mott. She was taken straight to the PCTU on Bipap with the possibility of being intubated again. Luckily she was able to do well on the Bipap machine and weaned well from there. It was a quicker stay and we talked about when we would intervene further with her heart and right lung if needed. Paisley was discharged on 1/21/19. We went home and everything was great. Saw the pediatrician on 1/22/19 for a physical. The next morning was one of the worst days we had. Our night was going well and then around 6am Paisley was very upset and was bearing down, she then spit up and inhaled it almost instantly. We proceeded to suction her and get her up as fast as we possibly could but it was too late. Within seconds she was dropping her oxygen saturation from low 90's down into the 60's. I had waken up my mom and had her call 911. Our local Canton FD was here with in minutes and were incredible with our baby girl. I was worried about her needed an airway and fast but she was able to pull through enough for us to get to the ER. It was the morning of a terrible ice storm and they were not sure if we would go to Mott or St. Joe depending on her status. I proceeded to go with them in the ambulance and Ryan followed behind. She stayed stable on the way and when we got there she was taken straight to the emergency bay. She was stabilized and taken back up to the PCTU where we consulted with all the doctors. At this time we had just about nothing left and demanded more answers as to WHY this keeps happening and needing to help her better this time. Everyone was in agreement and that there was clearly something we were missing and she was not going home until it was figured out. So over the course of 4 months she had multiple tests / scans / procedures and that is when we found out she has whats called Broncomalacia (floppy airway). Her airway was closing itself when she would bear down or get upset. This happened all too much. We had consults with ENT to see if she would be a candidate for a airway stent. on paper she looked like the perfect match. Unfortunately her narrowing was much to distal (far down) for them to do the surgery. We were left with only one option. Paisley needed a Tracheostomy. This way with her being on a ventilator 24/7 it will keep her airway open with pressure. We tried to see if she could wean off the CPAP (which is pressure going through a nasal cannula) she was not able too, every time we tried she let us know she was not happy about it and it made our decision easier about her needing the trach. On March 1st Paisley left for surgery to get her Trach and also a gtube at 7am and we couldn't wait for her to come back with no tubes on her face. It was truly overwhelming to see her for the first time with nothing on her face and she finally looked at rest. It was a tough week of healing. At first things didn't go so well. Her airway was stable and that was such a relief but she was not tolerating her stomach feeds through her new gtube. So with days of trying she ended up with a NJ (tube into her intestine) on March 8th. It was such a defeat to send her down to have it placed. She was miserable and vomiting constantly. We then tried to figure out why, why can't she tolerate in her belly. Not only could she not tolerate her feeds but she could't even process her own stomach contents. To this day she still has a NJ tube and after multiple motility med trials, GI consults, were told her stomach is underdeveloped (like the rest of her) and only time will heal her. In time it will start working and moving contents through. So until then her gtube is to a continuous venting system. She is continuously fed through her NJ tube. We are working on her severe oral aversion with speech therapy and at home. It will be a long road but she will get there. Good news is that she is growing well. This was our longest stay but we got more answers and solutions to where we are comfortable being home with her now. Paisley was discharged on 5/14/19 and has been home for a couple weeks now. She is doing well, growing, playing, enjoying her family and we are enjoying her. Life is hard and she has a lot of equipment attached to her at all times. We have private duty nurses come to take care of her at night, when we can find good ones, if not we take shifts. She needs 24/7 monitoring while on the ventilator. We are hoping to have her off the vent and no needed this trach anymore by the time she is 2-3 years old. She will grow out of the broncomalacia. Until then we will absorb every moment we can. She will be going in this summer for some cardiac stenting to keep her stable until she will need a big open heart procedure when she is a little older. With her heart disease, it will become more severe in the future so we have time now to make sure we can help her stay stable and then when the time comes hopefully fix her heart. We are not sure what the future holds for Paisley but we do know how strong she is and what a warrior we are raising. She never ceases to amaze us and being her parents is the best job we could ever have. If you read all of this, thank you! Please donate we need to bring more awareness and funding to CHD!! Paisley and all the other heart warrior families appreciate your help.

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$2,215
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1. TWThomas Wroblewski
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2. CCChristopher, Amy, Madison, Bryce, And Riley Cime
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4. BWBob And Michelle Wahl
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5. ABAndrea & Matt Brooke
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6. TWThomas Wroblewski
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Team Paisley

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