shayla: May 2009

Friday, May 15, 2009

We are home!!!!

We got home early this morning 5am mountain time. Shayla did great on the trip here we did have to stop alot to get her out of car seat so that she didn't suffer too much but she has enjoyed being home for the first time in a very long time and in her own room and bed. It is really weird being home though and not at the Ronald McDonald house. We already miss everyone there and can't wait to see everyone we have to come back to Seattle on the 27th of this month and June 10th and we should hopefully get a gj tube at that time cause they finally agreed that it has been enough with her pulling out her feeding tube cause she did it the nite before we left too. she is doing so good and they are so happy with her she is now here on 1 liter of O2 and in Seattle it is only .5 liters. not much else to report except that she is learning how to laugh and it is so cute once i take some more pictures i will post them. We do have to drive to Boise next week to see our doctor there.

With love the Wilson family

Friday, May 8, 2009

Good news and some bad

Today we got told that we get to leave Wednesday but we do have to go see our cardiologist in Boise on Friday this is all saying that she does good over the weekend. Also even though she wasn't getting full fluids over the last week she did manage to keep her electrolytes in tack but she lost weight which isn't good so we moved her tube today back to an ND tube so that she can get her fluids and gain weight like she is suppose to. The other bad news is that she is going through some major withdraws today so we had to go back up on her morphine because it was a huge jump down even though we went down on it Monday and it is now Friday but the ativan one wasn't that big so we are no longer to follow the wein schedule but we are to only go down by .1mg on each every week so that we have a smooth transition home and that the doctors back home don't have to try and trouble shoot what is going on when they don't really know her like the ones here. We have the last visit to doctors here today at least for 2weeks we do still have the sleep study tomorrow but that is it until we go home thank god i do still have to pick up one last prescription there but that is it. My husbands mom is going to fly in hopefully and drive back with me so i don't have to drive alone thank god. I hate driving over the blue mountains i just get to nervous doing it and if it was just the two of us i would just completely freak out let alone driving 12hrs alone so we will be home in time to put her on her bipap and to bed and relax and go to bed myself lol. once again i know i say it all the time thank you everyone for everything especially my dads work down in ocean park they have aloud my dad to put up containers to raise money for us to help us out while we were here also since we are still in need of our own place some friends of his are going to be putting a bake sale thing together there on the beach to help raise money for us to get our own place If any of them read this thank you so much it means alot for everything.

With love the Wilson family

Monday, May 4, 2009

It is even sooner

Well Friday before the transplant team left for the day Jason called me and told me that they were getting things set up for us to fly back here on the 22ND for an appt. with them and i asked him what sense did that make if i left on the 20Th to turn around and come back on the 22ND and he told me that we will get to go home even sooner we have our one appt with them on Friday morning and then a sleep study on Saturday so hopefully i should be able to take off a week from today. This all is so weird we spent the last almost 2 years of our life here at this hospital and we finally get to take our baby home in some ways i love it because i have gotten to see my dad alot more then i would have and my aunt and i will miss that alot. along with alot of the friends that we have made here with out everyones support that they gave me when my husband wasn't here and when he was here i don't think that we would have gotten through it. I will miss everyone and will never forget it. Well for the last week almost Shayla has been being fed in her belly for the first time in over a year and she has done great with it so far i can't believe how well she is handling it even with all her meds that she gets. Not much else to report today.

With love the Wilson Family

Shayla's Story

Shayla R. Wilson was born November 5th of 2007. While pregnant with her I was told that she had a defect called atrial septal defect (left side of heart was bigger than her right) she also was born with one kidney. After shayla was born we were in the NICU for exactly 1 wk when we left the hospital her pda (something all babies are born with) was closing about a week after we went home it actually shot back open so we ended up in the hospital we got out almost a week later and then we flew to Seattle children’s hospital to have the pda legated.Once that was done we went home and she was doing good for about 2 weeks she had started gaining on average 3ozs a day which is not good for babies our pediatrician kept telling me that it was fine and she was fine even though I knew it didn't seem right on December 16th we took her to the er because she was really fussy hadn't slept in 24hrs really and wouldn't eat when they looked at her they said that all she had was gas and that they weren't going to admit her "yet" is what the doctor told us on December 19th they admitted her to the hospital her o2 stats were only about 30 percent once we were admitted they had given her blood and she had gotten her o2 back up but she would still desat to about 69 percent and she was suppose to stay between 75 and 85 percent we stayed in the twin falls hospital tell December 30th even though they weren't doing anything we couldn't have done at home they released her with o2 blow by and we were told we had to go to Boise they next day while in twin falls they also told us that a baby should only gain 1 ounce to a ounce and a half a day so I fired her pediatrician and got another one.When we got to the Boise hospital we got admitted there so her cardiologist could keep a close eye on her. While at that hospital she got RSV and ended up on the ventilator. So we had to push back coming to Seattle for the surgery that she needed which was a BT shunt and a av valve repair to try and fix the whole in her heart we got released from Boise on January 17th but we couldn't go home we stayed at the Ronald McDonald house in Boise until we flew out on January 20 and then we would go to Seattle and be admitted and they were going to do the surgery on January 22nd. On January 22nd we were told that they couldn't do her surgery because her lungs were still inflamed from the rsv she had gotten in Boise we were released from Seattle tell the 30th which was when they would do they surgery we didn't make it out tell then we were discharged on January 24th and back in January 26th I had taken her to the er because once again she hadn't slept and was really fussy and I did everything that I could to try to keep her calm and nothing I would do would work they admitted her that night and I went back to the hotel after she finally got a room at 12am they called me at 5am telling me she was fussy and just wouldn't calm down the only thing I knew to tell them was that that was why I had brought her back and to give her lasix (a diuretics) cause I knew she also had a lot of fluid on board at 8am they called and told me she had coded and they had to put her on the ventilator I rushed to the hospital and I knew it wasn't good I got there and they told me that she had gotten worse and that they needed to get her surgery done which I could have told them but they didn't want to listen when I was telling them of course what do I know! They took her back for surgery on January 30th 2008 for the av valve repair and BT shunt. We stayed on the ventilator for 8 weeks when we finally got down to the normal floor and out of the icu about a week after we got down there she crashed and had to be put back on the ventilator from then on we continued to fight with the ventilator we were on and off a lot.On July 2nd we almost lost shayla she had gotten a really bad infection that showed up in 3 hours we tried to get her to purk up for 8 hours we had actually signed papers to let the doctors put her on life support thank god about an hour after they got back there they came out and told us that they sliced her leg and put in an arterial line and she perked up so we avoided the life support. After those things seemed to be getting better but we were still on the ventilator no matter what we did nothing seemed to work to get her off of it.In November she got really sick again she had a fever of 107 for at least 24hrs and we couldn’t figure out where it came from the next thing that we knew she started having seizures. They put her on a med to control the seizures and finally after 48hrs the fevers stopped somewhat. They couldn’t figure out why any of this happened they did a spinal tap and saw that there was some white blood cells in her fluid and you’re not supposed to have any so they think she had a mild case of spinal meningitis also they told us at this time that because of a stroke that she had way back in February that she was more likely that she will have seizures so she will be on this seizure medication for the rest of her life. During this she also had gotten inactivated on the transplant list. A week or so later everything was somewhat normal and they put her back on the transplant list. A week after that she got a HEART on December 9th of 2008.She had a rough time after her heart transplant but she made it through everything and is doing good today and she is off the ventilator but she is still on what they call a bipap that just pushes pressure into her lungs. Everything is good and we are actually expected to be out of the hospital within a month maybe a little longer.

With love the Wilson Family

shayla

Friday, May 15, 2009

We are home!!!!

Friday, May 8, 2009

Good news and some bad

Monday, May 4, 2009

It is even sooner

Shayla's Story

Our address

Shayla's Donation account

Followers

Blog Archive