Day 24 of recovery

7/24/14

Day 24 of recovery

Well, we wouldn’t think that everything would go absolutely smooth without any probs, would we?  It hasn’t!  Yesterday we decided to be really adventurous & go to Target to get some groceries.  The hospital had given Alexa a gift card that she wanted to spend also.  Dr. C had told us that we needed to get Alexa out to do something every single day.  He said that we needed to go to Twins games, the zoo & whatever else we could to distract her from the pain.  By the time we got to Target & started walking around for a bit, Alexa was in so much pain.  This was the most awesome Target though.  It was 3 stories & the escalator was really cool.  It had sort of a separate track for you to put you cart on next to the escalator while you were going up.  It was pretty hard to find things though.  By the time we got out of there & got back to the RMH Alexa was pretty bad so she just rested.  I got some laundry done later after dinner & Ty & the kids were excited to find the unfinished game room next to the laundry room.  They had a good time playing for a while.  Alexa’s feeding tube clogged up a couple of times during the day but the alarm didn’t go off on the pump like it was supposed to.  After getting back to the room from the game room we looked at the feeding bag & saw that there wasn’t near enough gone & it was supposed to be almost empty.  The tube going into her belly was empty but the pump was still pumping & hadn’t sounded the alarm so she had been without any food for a couple of hrs!  That was really bad since it would throw off her blood sugar too much.  I called home health care & told them & they said they would have a new pump sent out in the morn.  We started working on getting it unclogged with lots of really warm water & were finally able to do it.   We were able to get all of her syringes of meds down it but a few min later it was clogged again.  Ty worked & worked on trying to get the clog out for about ½ hr but was unable to get it.  Home health told us we needed to take her to the ER before her blood sugar went down too much so we all loaded up & went down there.  They worked on it & couldn’t get it to move so tried running a wire down it & put medicine in to dissolve it but still couldn’t get it.  They finally decided she would have to be admitted so they could get her hooked up to an IV & get the clog out the next day.  I left for a min & when I came back everyone was so happy!  The nurse had gotten some coke & was finally able to get the clog out so we were able to go home!  When we got back I called home health & told them we had to have the new pump that night so they sent one over.  Just when we got to bed & got into a deep sleep the alarm went off.  Ty was able to get the clog out & I didn’t budge, we were so worn out!  He got back into bed & a few min later, there goes the alarm again!  He got the clog out again & came back to bed & there it went again.  We both got up then & he worked on it for over an hr with lots of coke & warm water but just couldn’t get it.  I took Ty & her over to the ER & then went back to the RMH to stay with Tyson & try to get some sleep, haha!  As if I could sleep!!  They got her admitted into a room pretty quick & they were able to get a little bit of sleep.  They didn’t want to change out the tube while she was awake since Dr. C had put a stitch inside the tummy to keep the tube from flipping.  They had been having probs with it flipping in lots of kids & they have to open them back up to fix it. 

I couldn’t sleep at all that night & finally ended up getting to sleep at 5 AM.  I got a call at 9:30 from Dr. Clavel’s office reminding me that Tyson was supposed to have an apt with PT at 9:00.  I explained to them what we had been thru & she told me they could see him at 1:00.  I started packing a suitcase & showered & got all ready to go to the hospital & then got a call back from Dr. Clavel’s office telling me that Dr. Clavel had been thinking & researching about Tyson’s headaches & doesn’t want him to go to PT without seeing him again & he wanted to be present during PT to make sure they didn’t do anything to make him worse.  I guess it was meant for us to miss that apt!!  I’m so happy to have such a good dr that is really trying to help us finally!!  Just as we were getting ready to walk out the door Ty called & said there had been a surgery cancellation & they were able to get Alexa in right then to replace the tube.  He said he thought it was going to be a pretty quick procedure so I decided not to take our stuff over there.  BIG MISTAKE!  I should know how slow hospitals move by now, haha!!  By the time we got over there we sat in her room for quite a while & then called Ty & found out she hadn’t even gone back yet.  We headed over to the OR & were able to go back & visit with her before she went back.  It was really funny when we walked in & the 1^st thing Alexa said was that she was so starving & really wanted the cake & cookie that was at the RMH.  Ty said she had been talking about it all day & was so worried that I was going to throw it away.  During dinner the night before there was a really cool cake sitting on the counter that hadn’t been cut yet & Alexa wanted a piece.  When I went down later I saw it had been cut so I took a couple of pieces up to our room.  Her eyes got really wide & she was so excited I’d brought her some.  Then we waited & waited in the OR waiting rm.  We were starting to get a bit worried since it was taking so long but finally the dr came out & said everything went fine & the new tube was in place.  Ty was able to go back to the room & nap for a couple of hrs while Tyson & I stayed there & waited & waited for Alexa to finally wake up.  I think she was just enjoying finally getting some nice sleep.  When she finally came around she was absolutely starving & started getting pretty shaky, her blood sugar was pretty low again.  All she could talk about was getting home to her cake, haha!!  Tyson thought it was hilarious!  We finally made it back to the room around 4:30 & she had to start eating things to get her sugar back up.  She ordered a huge meal & took a couple of bites from each thing when we got back to her rm.  Tyson was happy to help her finish a few things.  After they got her blood sugar stable then they finally started her tube feeds again & now they are telling us we have to stay for an hr or so to make sure they stay stable.  Here is it 8:00 PM now & we are still here waiting.  Ty & I went back to RMH earlier & got our stuff so I could do this update & he is having a nice nap now, which is good.  He can stay up tonight while I get to sleep, haha!!  Poor Tyson has been quite bored today but it is good for him to be here with Alexa.  She is still really happy to have him here!

Thanks so much for the letters & cards that have been sent, Alexa absolutely loves them.  She is so worried that since we’ve left the hospital her mail won’t catch up with us but when we went for our dr apt on Tues they had her mail waiting for her.  She got a couple of letters today at the RMH, one from Gfather & Alba & one from Sarah Smartt, who has been thru so many trials of her one with her brain cancer.  We are so thankful Sarah shared her story with us & she is in our prayers!! 

Oh, one really funny thing that happened when Tyson got here on Tues.  He went in the bathroom to brush his teeth & came out with Alex

a’s hemorrhoid crm in his hands asking if this was the toothpaste he was supposed to use.  BAHAHAHA, we had such a great laugh about that!!!  I should have just let him use it!!

Well, we just got home finally & it’s 9:45 so good night!

 

 

 

 

 

This is Jerry, the RMH dog that roams around. He's kind of a snob & doesn't come to you unless you have food but Alexa really likes him. His brother's name is Tom, haha!

 

This is Caleb & Lisa Betts. Caleb had the same surgery about 2 1/2 months ago & they went home today. We are going to miss them!

 

 

 

 

This is the cool shopping cart escalator at the 3 story Target!

 

 

 

 

 

 

Tyson loved playing in the RMH castle playhouse!

 

 

 

This is the unfinished game room at RMH. Ty & Tyson have already talked to them about letting them help fix it up while we are here! They have to have a project you know!!

 

 

Alexa waiting to go in to get her feeding tube replaced, she's feeling a bit anxious!

 

 

Tyson made himself a bed while waiting for Alexa to come out!