shayla: September 2009

Friday, September 11, 2009

not so good news

well on Tuesday after just getting back from Seattle Saturday me and Shayla ended up sick basically just with a cold and then Wednesday i got an unexpected call from the transplant team in Seattle telling me that Shayla's cmv test came back that she has 1,000 copies which is their cut off point and that we needed to have blood drawn again today to see where it is at well we wont know the results tell next week but if it does anything like it did last time she got it in the end of march first part of April we will be back in Seattle within the next couple of weeks and she will be admitted to the hospital and put on iv antibiotics. if we get lucky though we will be able to use the oral antibiotic and pray that it works. so far she is not showing any of the signs that she did last time to which we ended up in the hospital we haven't had any puking except one night and that was just a little bit because she coughed really hard so we are going to keep our fingers crossed that this will just go away this time without a hospital stay. on a good note Shayla has been fed through her stomach only for a week now and has been doing great with it even on her bi pap. once we know more on the cmv i will post and let everyone know what is going on. please keep your fingers crossed that we don't end up in Seattle before we are scheduled for just normal check ups.

with love the Wilson family

Monday, September 7, 2009

shayla now and then

Shayla august 29th 09 you wouldn't believe that this is the same child from 2 years ago well almost she turns 2 in 2 months it is just so hard to believe how much she has changed and how much she has grown her doctors are so pleased with her we went up to the ICU and got to see one of her nurses and when she saw Shayla she almost cried Shayla is now feeding full time through her g portion of her tube which means that in November we should be able to just get the g button and not have to have the j part Shayla is also only on bipap now as needed and has dropped down to only needing .5 liters O2 during the day and 1 liter at night she is amazing she also now has a fascination with licking things and you but it is rather funny to watch cause she will even just sit there and lick her legs. we miss you all very much but we are still happy to be home we are back in seattle the 12th through the 15th next month.

with love the Wilson family

shayla earlier in august

shayla on the 4th of july with her great grandma

the first day that we were back in idaho since jan of 08

shayla back in hospital for what they call cmv

shayla out of the hospital with us and sleeping with daddy

shayla not too long before we got out of hospital for he first time since dec. 07- march 09

shayla when she finally came off ventalator after transplant for the first time in a very long time

when shayla was finally able to be awake after she was transplanted

2 weeks after heart transplant in 12/09/08

just after she had gotten so sick in november that we were off the transplant list for 1 week

This is after we put her on the transplant list obviously around halloween before she got really sick in november

This is just after she crashed in march of 08 when we figured out we weren't going anywhere any time soon

This one is when we thought we were going to bring her home in march of 08

this is shayla either just after her surgery in january of 08 or just before

This is the shayla that i took to seattle in january of 08

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, September 11, 2009

not so good news

Monday, September 7, 2009

shayla now and then

Shayla's Story

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