Today is a day to celebrate!!! Ally came home to Pittsburgh! After 4 months to the day, Ally for the first time since the beach in July got to experience some fresh air and freedom!
For us, its like we just served yet another prison term, and are finally able to be released to the general population of normal families. Still alot of work ahead, and probably about 2 more months of living in Pittsburgh, but we are glad to just be out and together as a family. The best Christmas gift anyone could give us!!
Ashley stayed home from school today to help bring Ally home. However, as luck and past history go, Ashley got a bad ear infection and is not feeling well. I guess we didn't deserve a complete day of joy without some issue, that would of been to easy for our family.
So now we will try and settle in to home here in Pittsburgh. Our work is never done when it comes to Ally, we now have added to our day, equipment companies, suppliers, hospital appts., and nursing at home. As for Ally's work, she will continue to get stronger with PT, OT therapies, as well a scheduled appt on Dec. 12 for a scope of her airway to see if we could possibly remove her trache before year end! That would be great!!
Well, not much more to report, but to say thank you to everyone in Pittsburgh that has helped save Ally's life, and bring her back to health, as well as our new friends that have supported both Jill and Ashley while I have been back home working trying to make ends meet. Without everyone's prayers and help, we would of never made it this far. As you know our journey has been long, and this is a major accomplishment!
Continue to pray for our friends we left behind today in the hospital, Logan, Tamiya, and all the others recovering and waiting for transplant. Many of these kids need your help, please say a prayer for them tonight!!
We are definitely on the launching pad to have Ally discharged. I think Ashley is the most excited she had even asked me if I could send a note to school saying that Ally will be coming home soon. She and some of her classmates worked on a welcome home banner for Ally:) Ally is looking great and we just need to get a few more things taken care of and we should be good to go. You will have to keep checking in for the official word that we are home!
I hope everyone has a wondeful Thanksgiving holiday. Things will be quiet here in Pittsburgh because it is just Shane, Ally, and myself. Ashley has been home for the week since she was out of school. I think she has enjoyed her time visiting all of her cousins and being at our house with the kitties. To be honest I don't mind that things will be quiet, we don't get much down time so this week has been a nice break. I also don't need to do anything special for Thanksgiving because I am thankful for everyday. The good days, the bad days, and all the days in between.
There seems to be so much stuff to report since last week that I don't even know where to begin. Oh yeah! It is pretty much all good stuff too:)
First off Ally has finally been moved to the transplant floor, which means she is officially no longer under the ICU's care. We loved the entire ICU team but since they typically don't discharge to home it seemed to be hard to get all the little stuff coordinated. The transplant team is of course used to sending transplant kids home so we have gotten a lot accomplished in the past two days. All of her meds have been switched to PO as opposed to IV (except for the IV antibiotics). The docs have also switched her meds a little so that things are spaced out better. Last week Ally was getting a med almost every hour between 6am and 2am (with up to eight meds give at one time). Yikes!! needless to say that would be a little difficult to manage at home. Now she will only need to be getting meds about every four hours with a six hour break during the night.
Second, I think we finally have Ally's trach issues resolved. Originally ENT said they would do the first trach change last Friday but then Friday rolled around and they decided they would like a smaller trach for Ally, which would have to be custom ordered. Today they decided that we could put in a smaller trach with a different length (something they had available here at the hospital). Plus they were fine with me changing the trach. Most importantly the trach change went well and Ally's trach site looks great compared to how it looked before it was revised last week. She has also been spending the day with nothing more than a humidification adapter on her trach with No Oxygen!!! This would make one less thing for me to have to drag around when Ally comes home
Third Ally's stoma output has finally slowed to a normal output and the plan is to get her back up to 45cc/hour by Thursday. Since the stoma output has slowed they have changed Ally's replacement fluid so that it only runs at night. This means for the first time in almost four months Ally was disconnected from an IV for at least part of her day. She definitely took full advantage of her time Tube-free and she took a couple of spins in a little car that she was driving around the unit in.
Finally, today we were given an official target discharge date for Ally. I am not sharing the date with you because then it will be a jinx! I am still torn on the idea of nursing so that is one thing that needs to be resolved. At this point I think I could get by without it during the month of December and I would really just like sometime for us to be a family without someone extra around. However I also know it could be a little too much work (yes even for SuperMom!) and my New Years resolution will probably have to be working on staying sane. Of course I have been trying to keep myself from going insane the past four years so why change anything now:)
I have some free time this week so I will try to update before Thanksgiving. Take care.
Just a real quick update to say that Ally is doing really well. Yesterday she even went for a little walk and today she is anxiously awaiting PT (yes I did say she is excited about PT) because she knows then she will be able to go on another walk. She also got moved to a private room which means I don't have to worry about what kind of roommate we end up with. Her output has slowed down considerably so I am hoping they will increase her feeds today. She also will be tried off of CPAP tonight when she is sleeping!
Now more importantly I really need everyone's help in praying for Ally's buddy Logan. I also am really worried about Logan's mom. She is a single parent and is dealing with a TON!!! of stuff right now and all on her own. Please pray for Logan's and Melissa's strength so that they can both overcome their latest struggles.
I knew I was right when I insisted that there was a problem with Ally's trach, even though ENT really did not want to give us the time of day. For the last two weeks I was really beginning to think that I was incompetent at changing a trach especially when ENT kept making it seem like we were making a big deal out of nothing. As if I was making up the fact that I couldn't get the trach in so that I could have her go to the OR for no reason! Well needless to say they did take Ally to the OR and much to their surprise they found a huge granuloma (granulation tissue) in Ally's airway. Plus the ENT doc said that even with removing the granulation tissue her trach is a very tight fit and that we may need to go down to a smaller size. Sometimes I just hate being right!
Ally's feeds have not been advanced at all but her stoma output has decreased quite a bit. I still think that she would be doing better if we fed her into her stomach and I just don't understand why they don't try an NG. She was NPO for the day since she went to the OR so hopefully tomorrow they will get a chance to advance feeds a little.
As for respiratory, Ally has been spending most of her day on a trache mask and then goes back on CPAP at night to sleep. Yesterday she had a little problem with her blood pressure (of course we don't know why) and needed quite a few boluses to get it back up so the docs kept her on CPAP in case her lungs got wet from the extra fluid. She seemed to do fine and today went back on the trach mask. She also got blood last night so she was literally bouncing off the walls this morning. She is really getting a lot stronger but still tires out quickly. I am hoping that tomorrow she will be able to go on a little walk when PT comes to work with her.
Ashley had a great weekend. She got to catch up with her Gram on Friday morning by just hanging out and playing. Then in the afternoon Shane and I took her to Toys R" Us so that she could get some ideas for Christmas. Saturday she and I got up bright and early to head to Hershey for High School Muscial. Ashley sang and smiled through the whole show. Plus she got to see her Grandmom, Aunt Heather, Aunt Kelly, and most of her cousins. It was a long day of driving but it was worth it to see her so happy. Then yesterday I took her to this little childrens theater that does interactive childrens plays to see Pocohantas. She is learning about Native Americans in school so it tied in perfectly with that.
Speaking of Ashley's school they have just been wondeful to Ashley and our family. Today I had to have a little meeting about discharge for Ally (1:30 to 3:00) plus Ally was on the OR schedule (3:00 which really means whenever) plus Ashley is done school at 2:30. Needless to say supermom I am not and there was just no way to be in three places at one time (two I can do but three is really pushing it)! Ashley's teachers were nice enough to offer to keep her after school until I could get back to get her and thankfully I am getting smarter and accepting help when people offer it. I really feel we have been so blessed with the wondeful people we have met here in Pittsburgh.
Anyhow, I don't think ther is too much else planned for this week. The ENT docs will do Ally's first trach change again and are planning on doing that on Friday. She was scoped today while in the OR so we should have her biopsy results on Wednesday.
Please say some extra prayers for Ally's buddy Logan. Logan was transplanted a week after Ally and has just had problem after problem. They got some even more difficult news tonight so he really needs some extra prayers. Also Ally's wonderful, wonderful, roommate Ruth went home today. We hated to see her go but we are so happy that she is finally making it home. Ruth's mom and I became pretty good friends over the last five weeks that we have shared a room, so I am definitley going to miss her friendship. Please keep Ruth and her family in your prayers while they adjust to life back at home. Despite what you may think it is not always easier to be at home even though that is were we all would rather be.
Slowly we are getting a couple of problems resolved this week and I am stressing the slow part!
Ally had yet another nightmare torture trach change on Tuesday leaving us all feeling drained especially poor Ally. Unfortunately ENT did not feel it was such a big deal so it took them until 9 o'clock last night to come by and see her (not to mention 4 phone calls from the ICU and transplant docs). Well surprise, surprise, they did see a problem. Ally's trach site has a significant amount of granulation tissue and unless I pull that apart while holding her chin up and pushing the trach in (virtually impossible unless I have four hands)I will not be able to get her trach in. ENT will have to take Ally back to the OR to remove the granulation tissue but it is a quick procedure and they will probably do it at the beginning of next week.
Our other big challenge this week has been feeds. Ally's feeds had been off Tuesday and Wednesday because she started to put what looked like formula out into her stoma bag. This would mean that she is not absorbing any of her feeds more than likely because her bowel moves too rapidly. She is on an excess of amount of meds to help slow down her gut but so far nothing seems to be helping much. She also had an upper GI done to see if she had a fistula which is a word I had hoped never to hear again. Thankfully everything looked good we just need to slow down her motility. I had asked about putting in an NG and feeding her into her stomach instead of through the J tube. The other option would be to switch her formula again.
The good news of the week is that Ally has been very happy and playful. She has been working very hard for both PT and OT. On Wednesday she even stood for a little while without having to hold on to anything. She has also been doing some trial off of the CPAP and has done great with that (not to mention she has done great both times her trache was out for a few minutes). Right now she is catching up on some playtime with her Daddy.
Hope everyone has a nice weekend. I know Ashley will I am taking her to see High School Musical on Ice tomorrow. I think she will have a blast!
Let's start with the good news! Despite Ally's big increase in output her biopsies look great. The bad news is we have no ideas why her stoma output has increased so much and why all of the sudden it is so watery. Today her doc switched around her IV fluids but if her output does not decrease in the next couple of days they will probably have to start her back on some TPN and stop the feeds to give her bowel some rest.
Otherwise Ally seems to be doing well. We are assuming the infection is under control becaus she has had no more fevers and generally seems to be acting well. The docs have weaned her vent to just CPAP and I am hoping that sometime this week the will give her some breaks from the ventilator.
The only other thing to report is that we had a little trache scare on Thursday. Last week when I changed Ally's trache I had some difficulty getting her trache in but eventually got it in and she seemed to be fine. However this week when I changed it I could not get the trache in no matter how many times I tried and neither could the respiratory therapist (he does all the teaching and probably changes at least five traches everyday). Thankfully Ally maintained her oxygen level on her own and it did not become an emergency situation. We were eventually able to get a smaller trache in but still with a bit of difficulty. ENT was consulted and at this point we are not sure what will be done but we do know that she cannot come home until this is resolved because it would just not be safe. So we will see what the plan is this week.
Oh well, never a dull moment. If I was feeling overwhelmed before, now I am feeling overwhelmed and incompetent:( Ally's previous trache I could have changed with my eyes closed so this has definitely made me a little nervous.
Hope everyone had a wondeful Halloween. Ally was rather crabby yesterday I think mostly becasue she was up most of Tuesday night. So needless to say she only had her costume (Alice in Wonderland) on twice for about 10 minutes. I did manage to snap a few good pictures and by looking at them you would never guess that she was crabby she was all smiles. Ashley had a very nice Halloween. She was dressed as Sharpay from High School Musical. We went trick or treating for about two hours and she also got some goodies at the hospital from a few of the nurses.
On top of the Halloween festivites our day was very busy. Ally had an echocardiogram done in the morning and then her stoma and belly dressing changed. After that she had physical therapy. Then I left for the airport to pick up Grandmom and Ally was supposed to be napping. Of course as soon as she laid down to take a nap ultrasound came in and woke her up. Next occupational therapy came by. Then Ashley came from school and got dressed in her costume for Ally. Needless to say Ally was awake until about 8pm without a nap all day. Besides she then got woken up again at 8 so that she could take her rejection meds. It was a very long day.
Unfortunately we also got a little bit of bad news. Ally's echo showed that she has an area of infection around her heart (endocarditis). She will need to remain on a strong dose of IV antibiotics for the next 6 weeks. I don't know what this means as far as us going home. At least now we know why she keeps ending up with infections. If during the next few weeks she starts to act sick again then another echo will be done to see if the area of infection is getting larger. If all stays good then she will have an echo done when she has completed the six weeks of antibiotics.
Otherwise she was scoped again this morning just because of the excessive amount of output from her stoma. The docs did switch her formula on Tuesday but so far we are not seeing to much of a change in output. Her doc really does not expect to see rejection on todays biopsies but he felt it is always best to air on the side of caution so that is why he ordered yet another scope.
I will try to update again tomorrow night with Ally's biopsy results.
Please keep our friends the Maichers in your prayers. The are facing some difficult decisions right now and they could use some extra prayers.