shayla: October 2009

Wednesday, October 21, 2009

ok its been a long time since i posted last

Well since i have posted last there has been alot of ups and downs but the ups have been great Shayla is really starting to babble alot now along with all of her other lovely noises that started about a month ago also a month ago she got sick and so did i right after we got back from our Seattle visit i got better within two weeks but she never did and then she started running fevers high fevers again but no seizures thank god took her to er that is close to where we live and they are just dummies so we went to Boise and she had a collapsed lung and she had the flu and dr law is convinced that she had the swine flu but he still wants her vaccinated against it. we only spent 4 days in hospital after that issue the day before we were released Shayla was off OXYGEN ALL DAY not just part and since then she really doesn't need it all to often there are still days here in Idaho that she does but not very much it is such a huge change considering we left the hospital with her need 2liters of oxygen she is still on bipap as well but the oxygen she need through there was 6liters and is now 3liters she is doing so great she just isn't the same baby anymore.
Also we have started pt, ot and speech and there is a school here that is going to be starting to work with her too when ever they call back but they therapy part speech believes we can get her to eat by mouth but we have to get her to stop putting her tongue up in the back of her mouth and then pt and ot believes we will get her sitting and walking and crawling that this is just all going to take some time but at least we have a plan and they have hope that this will happen and i believe that it will to.
On an even better note the walls of Shayla's donor heart are finally thinning out which is a really good thing except Dr kemna threatened to take Shayla's oximeter monitor away from me because Shayla's heart is doing so well that when she sleeps her heart rate is only in the 50s sometimes at least that is when she is in a sound sleep but of course i am still not use to it so i call and tell the transplant team about it. But other then me freaking sometimes with it she is doing so well she can roll onto her belly now just not off of it and she hates being on it (one of just a few things for ot/pt). Shayla also finally got a top tooth in so she can definitely bite now leaving indents on mommies fingers let me tell ya it hurts she also has this obsession with scratching doesn't matter where if its your eye you cheek or anything she can get her hands on. her other famous thing is when i put her in bed with me to take a nap or something if my back is facing her she pulls my hair and kicks me now and it is no better facing her cause than she just goes for everything. i am teaching her to hug though and trying to get her to learn to clap her hands and play with toys we did manage to find one toy that she absolutely loves it is a bumble bee by v-tech. This morning we had to get up to see docs and speech and i don't remember what i was doing or telling her but i swear i heard her tell me no and not just the shaking of the head no but the word lol she just cracks me up.

Well November 13Th is Shayla's biopsy of her heart for her 1yr it is a month early but i don't wanna chance not being able to get there in December because usually after Halloween it starts to get bad here sometimes not but i don't wanna take any chance also at that same time she will be getting a button hopefully just the g button not a gj also she will be having a hearing test and she will also be having another sleep study and she will also be having a eeg to see if we can get her off the keppra she has been on for seizures since just after her first birthday. the other good part about this is that after her biopsy we don't go back to Seattle tell January yippee!!!! i cant wait i am so tired of traveling i think it is high time to start making them further apart especially with how well she is doing. we still have the battles with keeping the blood levels straight like right now but that is partially do to the er here where we live don't wanna get into that because it makes me angry. well i don't think that there is much more to report right now but hopefully soon.

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

Wednesday, October 21, 2009

ok its been a long time since i posted last

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