Waiting, waiting, waiting, the past four years of my life have been waiting. Well needless to say we are still waiting for Ally to have her line pulled. She was supposed to go to IR today and have it pulled and a PICC placed but we ended being bumped off the schedule. Now she is supposed to be the first case tomorrow so we will see. We are also still waiting to see if she can come home with the PICC or if she will have to wait to come home next week after she has a new central line placed.
We are also still waiting for Pulmonology to come by and see Ally. I told the transplant staff that I was fine with Ally not getting discharged until next week if they add decanulation into the plan for the next week! It never hurts to ask.
Some of Ally's liver numbers have been up so late this afternoon she had an ultrasound done of her bile ducts. We should get these results tomorrow morning. We also finally got some confirmation on Ally's latest ECHO and the cardiologist feels everything looks normal.
The girls have been having a lot of fun playing with each other and one other little girl that is a transplant patient. Today was her birthday so the girls got to go to the Birthday party tonight (which sadly enough was in a conference room down the hall). However when you have pizza, ice cream, and a Hannah Montana birthday cake who cares if you are stuck in the hospital!
P.S. if you didn't get a chance to check this out yet make sure you check the link listed on the homepage to the Heintz Elf family.
Sorry to keep you all waiting for an update. Ally is doing much better and Ashley has gotten her appetite back which should help her to get better. Ally was moved to the IICU late Saturday and yesterday I talked the doc into letting her be sent up to the transplant floor. Being up on the floor should help her to get some rest since she will have a private room.
Ally has yet another line infection. She is growing the same bacteria in her line that she was growing before when she ended up with endocarditis. Infectious disease first thought they would try to treat the line with yet another IV antibiotics plus antibiotic locks. However today was the fourth day of positive blood cultures so she will have to have her line pulled and a temporary PICC line placed. Interventional Radiology will try to get her in for Thursday and then she will probably have a new line placed next week. This line got infected just two days after it was placed and it has been nothing but infections ever since so I am all for having it removed.
While we are inpatient the docs will put in a Pulmonology consult to see about having Ally's trach removed. Getting the trach removed could ultimately help us get rid of the central line too. When the trach is in it is much more difficult for Ally to eat or drink. However if she had the trach out then we could push her to drink more and then she would not need to rely on IV fluids for hydration. Anyhow, things move much more rapidly when you are an inpatient so we will see what we can do.
That is about all that is going on. We did get to do some fun stuff with Ashley this weekend while her grandparents were in town. She finally got to try out ice skating down at the PPG building and yesterday we took her to see the Polar Express at an Omnimax theater. Not to mention she opened all her gifts from both of her grandparents so she has plenty of new toys and other things to keep her busy.
I hope everyone has a wonderful Christmas. As for us we will have a great Christmas despite being in the hospital.
Good News!!! I just brought Ashley home from the hospital.
Bad News!!! Ally was admitted to the PICU at 4:30 this morning. Shane had called me home last night because Ally was not able to keep up her O2 sats and was really working to breathe. By the time I got home she had a fever and was vomitting. The ER docs thought it was best to place her on the vent to give her a little rest. She calmed down pretty soon after that. She has been started on some high dose stress steroids to help stop whatever this is we are fighting. When I left to bring Ashley home Ally was getting an ileoscopy.
We will try to update later when we know some more.
Ashley is still in the hospital, and most likely will remain there for for a few more days. The cultures came back positive for C-DIF. This is usually something you catch by touching surfaces and then, touching your mouth or nose. I'm sure Ashley picked it up at the hospital. The bacteria attacks the colon, causing severe diaherra, vomiting, and in worst cases blood in your stool.
Ashley of course has had all of the worst symptoms you could get with C-DIF. Currently she is taking Flagyl twice a day to help treat the bowel. The docs said she needs to have less stools with no more blood in order to come home. C-DIF is a very serious bacteria, and in some people can become a lifetime disease.
To top all of this off, Ally has been acting a little off today. Currently she has been needing oxygen to take naps. Our worrying is Ally may have caught some of the C-DIF spores. Guess we will see how things go over the next two days.
Please pray that Ashley's bleeding resides, and that Ally can stay infection free, and not catch the C-DIF. If Ally catches this, it could kill her.
The drama never ends for our family. Ally was released from the hospital late yesterday. She had a central line infection, of course. So all of this is the good news. Ally is home......but Ashley is not.
Ashley for the last couple of days has not been feeling well. Today she took a turn for the worse and became very dehydrated, and was vomiting non-stop. Needless to say we had to take her to the ER tonight, and currently was just admitted to the hospital! She has been getting fluids non-stop through an IV in her arm, and cultures were drawn. We should know more tomorrow.
You know if its not one child, it might as well be the other. These last four years have been difficult, and every time we think we may be making progress, our strength is tested again, and again. At some point life has to get a little easier, right?
Well, so much for staying at home. Ally is back in the hospital. After putting her to bed last night, we discovered she was breathing much faster and also had a slight fever. At about 2 a.m. her fever reached 102. We quickly took her to the ER, and then was admitted to the hospital at about 7a.m.
Ally had a rough night and currently is sleeping.
Anti-biotics were started this morning, and an x-ray showed her right lung was a little hazy. If we had to guess, it may be a central line infection. Needless to say we will be in the hospital for awhile, at least until Ally is feeling better.
Will update again soon with any new information on Ally's health.
Ally has been home for nearly two weeks and it has been absolutely wondeful (and completley exhausting). She looks great and is doing her best at getting around and keeping up with Ashley. It is so great to see the girls laughing and playing together.
The last two weeks have been filled with more appointments then I can count (today we had four). Ally was seen in transplant clinic twice last week and they made some med changes at both visits. She also had PT and OT two times last week. Ally also had a scope last week and one done this morning. Overall things have looked pretty good on the scopes they just wanted to double check some things that showed up on the biopsy last week.
Today Ally had PT, OT and an appointment with Nephrology for her out of control blood pressures. The renal doc prescirbed yet another blood pressure med so hopefully this one will help. Yesterday Ally had a bronchoscopy and her ENT doc felt that there is no reason to keep the trach. He would like us to schedule with Pulmonology just to be sure everything is good and then they will schedule for decanulation. Hopefully we can get this done in the beginning of next year.
I can not even begin to tell you how busy my days have been. Ally is on so many meds that I could fill my days by just giving meds. Shane and I did get a nice break this weekend when we went to New York City for my work Christmas party. It made for a very hectic weekend but I was glad we could get away and so thankful that my Mom was here to take care of the girls.
Otherwise we are just busy getting ready for Christmas. I hope you all enjoyed the pictures of the girls visit with Santa. They both were excited and even told Santa what they wanted for Christmas. Ashley seems a little disappointed that we will be in Pittsburgh for the holidays but we will make the most of it. Later this week we will put up our Christmas tree and we are hoping to get out and do some other Christmas activities this weekend.
The updates will probably be less frequent now that Ally is home. I will update sooner if there are any major changes otherwise I just really don't have the time to update. I hope everyone is enjoying the holiday season. I will definitley update before Christmas.
Please continue to keep Logan's family in your prayers. Logan's little body could no longer take the stress it was under and he is now at peace. There are no words to explain Logan's family's loss but I think his mom put things in perspective when she wrote the following on Logan's website. "It is hard to comprehend that Logan is not coming home, but he is home"
Hug your children a little harder today, they are such a precious gift.
Please say a lot of extra prayers for our friend Logan. Logan's condition has become very serious today and he and his mother need these extra prayers so that they can make it through the next few days.
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.
Well so much for coming home this week and at this point next week is not looking so good either. Ally spiked yet another temp on Sunday and this time she grew bacteria in her blood, urine, and trache cultures. Her blood cultures have been positive for two days now so the docs are getting a little concerned. Thankfully Ally has not been acting sick and has not had a temp since Sunday morning.
Ally has also been having an increase in stoma output. She was rescoped last Thursday and then again this Monday and both biopsies looked good. Transplant is thinking that it is probably related to her Milk allergy and have decided to switch her formula. Hopefully we will see an improvement in her output over the next few days.
Both of the girls are excited for Halloween. The had some trick or treaters tonight via our webcam. The girls got to see most of their cousins in their costumes. The girls also got to talk to their Daddy and both sets of their grandparents with the web cam. Ally got to do some fun Halloween activites this week thanks to her stoma nurse, Patty. She also had a girly day for Ally yesterday complete with feather boas, nail polish, lip gloss, eye shadow, hand cream, glitter spray, a new princess nightgown with a magic wand :) Ashley is going to trick or treat in the evening with some kids from her class. They do not dress up at school but are having pajama day instead.
I have been busy having training this week on Ally's homecare equipment. I am starting to feel a little panicked about having Ally as an outpatient, or maybe just a little overwhelmed. Thankfully I did have a wonderful relaxing weekend with some of my girlfriends from home. I also went out last week with Lynne and some of her friends for my birthday. We went to a Hibachi Japanesse Steakhouse and we had a really great time.
Hopefully I will get some great pictures of the girls tomorrow in their costumes and then we will add them to the site soon.
As always, our days have been filled with non-stop excitement here in the Heintz family!
Our weekend started off nicely. Saturday we had my cousins wedding to attend, and enjoyed every moment. I wish we could of done something for Jill's 29th birthday, but with all of our other committments, we just ran out of time. We tend to always somehow do nothing for ourselves, and always are too busy thinking of the others around us.
Sunday morning, came and before leaving for Pittsburgh we thought we would have breakfast with my parents and grandmother. While on the way to breakfast, the cars empty gas light was on. Knowing this the night before that our car was low on gas, and knowing from past experience we have driven it before numerous times with the light on empty for miles and miles, we thought we had plenty to make it to the gas station. Of course, as our black cloud would have it, we ran out of gas about a mile from home, just after all the steep hills have been passed, meaning only one thing.....I had to start walking home!!
Breakfast was delayed about an hour, but we finally managed to eat and then make our way to Pittsburgh afterwards.
On our way back, we learned that Ally was not feeling well, and had spiked a temperature. Cultures were drawn, and we knew before we arrived in Pitt, that Sunday night was not going to be much fun.
Once in Pitt, we found out another surprise. The oldest of out three cars (don't let the number 3 fool you, one has 200,000+, and the other has 160,000+ miles), the one I planned to return home in 2 days later, decided it was not going to start!! Again, what else could go wrong?
Monday came, we found a garage to fix our car, which of course needed a new fuel pump...another $800 out the door! Oh well, I guess it could be worse, we could be without the car at all, and I would be then flying home, minus one car.
Monday and today, Ally was feeling much better. She has not had a temperature since after having her antibiotics started on Sunday. The cultures that came back, shown she was growing something in her trache, and whatever it was is being treated and going away as the days pass.
Ally did some working out with PT, standing on her feet with the assistance of a workout board device for about 10 minutes. The goal is to get her muscles and body stronger, so that the rest of her will also feel better, including those lungs of hers!
Besides PT, Ally also had OT. She worked on playing and tasting food. I can tell you now, this will be one of our biggest challenges,,,getting Ally to eat by mouth!! Ally has never really ever eaten anything by mouth, so you can only imagine the struggles she may face ahead! Could mean some tough love, if you know what I mean?
Ally also had a scope of her small bowel yesterday. There was a few areas of some slight concern, so more test will be run Thursday. The doctors never really gave much explanation what they were seeing, but said we should not worry...easy for them to say of course.
The last final piece of information to share is that we are currently working with the hospital staff to develop a plan to get Ally out of the hospital, and home to our apartment in Pittsburgh as an outpatient. Needless to say, this takes a lot of work and planning, and for the most part we were told that Ally should be able to leave as early as November 1st. Don't hold your breath on that, because as past history goes, one doctor says one thing, and the next one on shift the following week has other ideas. At this point we know not to think that something is set in stone, and know to work a day at a time. If the November first happens, great, if not, we will try the next available day ;)
Continue to keep Ally in your prayers, and pray for continued strength, that she will soon be able to make it out of the hospital.
Not all that much to report since things have been going well. Ally finally is off her fentanyl (narcotic) and they will probably start to wean her methadone on Friday. She has also been doing CPAP all day and will probably start to do it at night too instead of the bi-pap. Tomorrow the docs said she could try a speaking valve so I am anxious to see how she does with that.
My Uncle Wally is in town on business so we got to visit with him some tonight. I also got to catch up with some of our friends at the hospital. Logan was looking good and hopefully he will join us on the floor soon (cotaforlogand.com) Matisse is another friend of ours and she is currently waiting for a multi-visceral transplant. She and her family are here all the way from New Zealand (and I thought I had it tough) Matisse was admitted early this morning with a line infection but seems to be doing better. (I don't know her official address but you could go to caringbridge.org and then click on visit a site then type in matissereid).
Grandmom also game into town today. Ashley and I will be headed home for the weekend so Grandmom can keep Ally company. Shane and I have a wedding on Saturday and then we will all be headed back out to Pittsburgh on Sunday. Ashley has open house at school on Monday so Shane will get to be in town for that and have some time with both of the girls.
I am sure I will not be updating again until Sunday so no need to worry. Oh yeah I almost forgot Ally's biopsies looked good from this week and next week they will probably switch her to an oral dosage of steroids.
Yet another week has flown by and Ally is getting stronger everyday. Sometimes it seems so strange how time can move so fast and yet so slow all at once. I can't believe we have been in Pittsburgh for 2 and a half months. There has been more and more talk of Ally being an outpatient and I am hoping that this week we will be able to set a target discharge date to aim towards.
We had more visitors this weekend and Ally and Ashley both enjoyed their time with their grandparents and cousins. Ashley got to visit the Carnegie Science Center which was a ton of fun and is definitely a place we will re-visit. She also had yet another trip to the Zoo (I think that was her fourth visit) but managed to see some new things. Including one of the tigers face to face. She told us that if the glass wasn't between them the tiger would have licked her!
Ally got to have some one on one time with her Gram and Pop and then some alone time today with her Daddy. She is settling into a nice routine as far as being asleep and awake. This of course is a huge help because I know when she is napping I can have a few hours of alone time with Ashley without feeling guilty for leaving Ally. She has also been participating with PT and OT. PT has been working on getting her to stand a little (with lots of support of course) and OT has been doing a lot of food play. The girls also got a new Barbie video this week that we have watched a least two times everyday. (Annie and Sandra I don't know if I should thank you for this video or send it back!)
Medically Ally is doing well too. We have finally reached her goal on feeds (45cc/hour). This week I plan on working with her to get her to take some formula by mouth. She has been doing well taking some of her meds by mouth so that is at least a start. Her scope and biopsies looked good and that makes three weeks of good results. Her white count was on the rise a little so she had some labs to check for EBV and CMV which can be nasty viruses for bowel transplant patients. We should have those results tomorrow. She has been doing well on her Bi-pap machine and today did CPAP for the entire day. She was put back on BI-pap tonight because she was breathing rapid and seemed a little distressed but lasting all day on CPAP was a good first day.
Ally has finally made it off her insulin drip and her glucose seems to be staying between 70 and 200. Which means it is still fluctuating a little but much better than it was before when she was anywhere between 40-455. They have also been able to wean her fentanyl a little everyday and she should be off her drip by the end of this week. Then we will need to start weaning her methadone and then the ativan. She really seems to like the methadone so that might be a slow wean too.
I guess that about sums up the week. Sorry I never get to update that often but like I said time just seems to slip away. If I think I am crazy busy now I don't know what I am going to do when Ally is outpatient but I still can't wait to find out:)
I hope everyone is enjoying the new video that Shane added of Ally. I know it has been too long since the last update but we were just too busy enjoying our week.
Ally finally moved out of the 6th floor ICU she is on the 7th floor's ICU. This is yet another step down unit but with semi-private rooms. Ally's roomate and her family are wondeful so that helps a lot. Plus it is still all the same docs and most of the same nurses that we had downstairs. She was also move off of the vent and onto a Bi-Pap machine. I am hoping that in the next couple of days she can do some sprinting off of this machine.
I got a great look at Ally's belly today and I really think her belly could be fully closed in the next two to three weeks. She has progressed well on her feeds and dare I say it but she is at 40cc/hour. Her overall goal would be 45cc/hour. For the first time in her life Ally's docs wrote an order to discontinue TPN!!! We did have to work on Ally's blood pressures a lot today. The last few days they have been ridiculously high (150's/100's) and that is with Ally already recieving three blood pressure meds. All of her doses have been increased and at least by tonight her blood pressure was 130's over 80's.
Ashley and Ally really enjoyed themselves today. Ashley got to sit in bed and play with Ally. They played Barbies and watched a video, played Candyland and Ashley showed Ally the pictures from her birthday on the computer. The girls were laughing and giggling and just acting silly like little girls should. It was really a wonderful day.
If you didn't checkout the new video of Ally make sure you do, she is too cute.
Crazy, crazy, crazy, or busy, busy, busy!!! I can never decide which way to describe my life. Maybe it is because I am so busy that I am going crazy:)
Anyhow, Ally's last few days have been okay, certainly not as good as the beginning of the week. Thursday and Friday she had fevers and today she had growth on her blood and urine cultures. Yesterday she was started on IV antibiotics and she had been off them about five days. Not to mention the line that we are getting positive blood cultures from was just placed on Tuesday. More than likely it is an overall blood infection and not just a line infection. The good news is she did not have a fever today and she was much more happy and content compared to yesterday.
Ally was also having increase stool from her ostomy so the docs backed off on the feeds a little. The increase output along with the fever made the transplant docs think rejection, but a scope and biopsies were done and everything looks good. We are all in agreement that a line infection would be better than rejection (lesser of two evils). She is doing well on the vent and has been mostly on CPAP settings.
Thankfully today was a great day for both Ally and Ashley. Ally was extremely happy this morning and this afternoon (although in between she had some meltdown moments). She was laughing, smiling, playing games, reading books, and watching movies. She was also awake from 8-4 and was beyond exhausted. Not to mention somehow she missed her noon methadone dose so by 4pm she was getting a little wild. The nurses were nice enough to sneak in all of her cousins to visit. I think Ally enjoyed this just as much as all of her cousins did. She even got dressed up for them. First she applied her big girl chapstick (which is bright red and Ally applies it for about five minutes. We have to get a picture!). Then she put on her new princess dress (thank you Patty her stoma and wound nurse) along with her matching headband and shoes. She was really too cute!
Ashely had a blast at her glow in the dark miniature golf birthday party. Afterwards she went with her cousins back to their hotel to swim. Then we all had a nice dinner out and headed back to the apartment for presents and cake. However, I think I forgot to mention that it was 10pm or after when they all went to bed last night and they were all awake before 7am. Not a good combo. Tonight I am praying that they all sleep to 8am (I am not joking either I am really going to pray for this). Tomorrow Ashley has another birthday party to go to for a little boy in her class and then I think we are headed to the zoo or the childrens' museum.
So I guess overall the week has been good. Ashley had another babysitter the other night (her one theache's daughter) which was a help and I think she will be helping out on a regular basis. Not to mention she was such a well behaved girl all week at the hospital and really got to enjoy being with Ally again. Ally's week was up and then down but seems to be back on the upswing and that's all that matters. We have a ton of pictures from the week so I will try to have Shane post some soon. Please leave Ashley some birthday messages in the guestbook and enjoy the rest of the weekend.
Also before I forget thank you again to Lynne. All of our faithful website followers may start to get sick of seeing her name but it is going to come up a lot because she has been such a huge help to me (not to mention she has now enlisted all of her coworkers, friends, and family to help me too). Lynne had planned a little outing the other day for Ashley as part of a birthday present and Ashley had a blast with all of the kids. Thank you Lynne, Terri, Grace, Kelly, Sidney, and little Jack too:)
Today was the first day that the "H" word has been mentioned (the "H" word is home and I don't dare mention this in front of Ally). Of course this is a long way off but the nurse who does all the homecare coordinating came by to talk to me this morning. It is never to early to get started on insurance approval for homecare infusion, equipment, nursing, therapy, and whatever else it takes to get Ally out of the hospital. We talked a little about what Ally will need and what companies she will start contacting. If all goes very smoothly Ally could be outpatient in another month but that is a big "IF".
Ally's last two days have been good. Yesterday she had a wonderful morning and by noon she was completely worn out from playing all morning. Needless to say she slept for the next four hours only to wake up on the wrong side of the bed. Ashley was very dissappointed that Ally wanted nothing to do with her and would not even play one game of Candyland:(
This morning Ally was in an okay mood. She had her melt down moments but twice I caught her smiling. I was also pleasantly surprised when she worked with her OT instead of throwing the toys back. She was supposed to get her first trache change today but she had scheduling conflicts. ENT came in to change her trache just as she was headed downstairs to IR to have another central line placed (double lumen then we can loose all of her other lines). I hope ENT comes by early tomorrow to do the change. Once she has her first trache change she will be allowed out of her bed and then I can finally hold her!
The scope that was done yesterday looked good and Dr.Kyle said that the biopsy looked better than last weeks. However he said he would like her scoped again on Thursday because the biopsy was not perfect. She has not had her feeds increased at all this week so hopefully we will get around to that tomorrow. Most of the day today her feeds were off so that she could be sedated in IR. The only other changes have been the vent weans. Ally did a CPAP trial yesterday and ended up doing so well that she was on CPAP for almost 6 hours. She was then put back on a rate for a few hours and then went to CPAP again. During rounds the docs said that she could just switch to CPAP all day:) Of course then she got sedated and paralyzed for the new line so she is now back on a rate:( Hopefully she will be back on CPAP tomorrow.
Ashley has also been having a good week. I think she may explode with excitement and exhaustion by the end of this week. She is counting down the days to her birthday celebrations (yes, celebrations not celebration) I think next year she may be dissappointed when things are back to normal and she just has her boring birthday party at home. The festivities begin Thursday and will not stop till Monday. Plus she has a party for one of her classmates on Sunday. She also had a new babysitter last night (someone from home who goes to school at Duquesne) and one of her teacher's daughter is going to babysit for a little on Thursday. This is a huge help for me and Ashley loves all the attention. I am going to add a link to Ashley's school. Ashley is one of the featured artist this month in their online art gallery.
I wish there was a way for me to describe what a wonderful day today was for me but all I can say is Ally is back!!! She is by no means anywhere close to 100% but she is definitely back. Today we got to see her spunk, determination, and her laid back happy self (I could be that laid back if they gave me all the meds she gets). I think Ashley is even more ecstatic than me and she was even complaining that she had to leave the hospital and couldn't continue to stay and play with Ally.
I also wish I knew how to add pictures to the website because I had the chance to capture the moment. Needless to say you will all have to wait for the weekend when Shane can add the pictures.
On to the details. We had a list of things that we wanted discontinued and Ally's docs happily obliged. Her NG tube was removed so now she has a completely tube free face:) She also had her foley catheter removed. Her vent settings were weaned again and her narcotics were weaned during the night. Her feeds were increased and her stoma output has slowed down which means she has time to absorb her food.
The big news tonight when I talked to her nurse was that Ally is moving to IICU!!! This is great news a huge step in the right direction and a step closer to the floor, a step closer to discharge, a step closer to home (need I say more).
I really wish there was a better way for me to capture today. Seeing Ashley and Ally playing together again after so long left beyond emotional. A week ago I would have said that this roller coaster ride was never going to end but now I am praying we turned the corner and we can finish out the ride smoothly. As i always tell Ashley, "the sooner you get to bed the sooner tomorrow will come". Well I am going to listen to my own advice and go to bed because hopefully tomorrow will be just as wonderful as today.
Yesterday was a good day for Ally. She seemed comfortable and rested well throughout the day. When she was awake she was content but still her fiesty disagreeable self. Her vent settings were weaned again and she tolerated that just fine. I really don't think she will be vent dependent long. We also were able to wean her narcotics for the first time in weeks.
Ashley had a great time at the Pirates game. It was one of those magical type of nights (I can't believe I am saying magical and Pirates game in the same breath). Ashley was so happy at the game and I think she felt lucky to have Shane and I all to herself. During the inning breaks Ashley would get up on Shane's shoulders and try to get the camera guys attention. It took until the bottom of the 9th but she finally made it up on the big screen in center field. She was dancing to the "YMCA" and pointing her big red "Go Pirates" foam finger. The fireworks after the game made for a great ending to our evening and on our way out people kept saying to Ashley 'we saw you on the big TV". She was tickled pink.
Shane will add some pictures from the game sometime this week. We think we may have some video from the beach that we haven't added so maybe he will get around to that too.
Today I took a huge sigh of relief! Around 4:00 Ally was wisked off to the OR for her tracheotomoy and returned around 5:15 with a beautiful tape and tube free face (I am not counting the NG tube that she still has). I would have never thought I would be so excited to see a trache again but I really feel that trache is going to be the turning point for Ally.
The ENT docs started with a bronchoscopy to look at Ally's airway. It is true what they say a picture can speak a thousand words. The scope pictures clearly showed while Ally was struggling with extubation. About half of Ally's airway is blocked with granulation tissue that has formed around the endotracheal tube (breathing tube). With the narrowing of her airway it was just too difficult for her to get the amount of air that she needed. The trache will allow us to bypass that inflammed area and allow it the time it will need to heal on it's own. Also her vocal cords looked great so I am sure it won't be long till we hear her precious voice.
Ally did great with the procedure and did not need to have her vent settings increased at all. I am really hoping that since this looks like an airway issue she may not be dependent on the vent too much longer. She will have her first trache change sometime next week and then we will begin our training (again).
Thank you to everyone for the extra prayers for Ally and our family. We are hoping for a calm and dare I say relaxing weekend! Tomorrow night we are headed to a Pirates game complete with fireworks, so Ashley should have fun. Not to mention it will be nice for her to have Shane and I all to herself. Ashley has been dragging a little bit this week. I feel like she was a little lost in the craziness of things. Her allergies have really been bad this week so that certainly is not helping things. Hopefully she will get the chance to catch up with her rest over the weekend.
Sometimes you have to take a few steps back to be able to move forward. Ally has apparently been mastering this process for the past three years and is about to take yet another backward step in the hopes that we can finally start to move forward. Late tonight ENT stopped by Ally's bed and I signed consent for a tracheotomy. Ally will probably be headed to the OR sometime tomorrow or Friday (more than likely it will be Friday).
Over the last few days Ally has not made any progress in weaning from the vent and has even had her vent settings increased. Today her x-ray showed that the right lung's upper lobe was collapsed. Her agitation and frustration has her exhausted and the consensus seems to be that at this point she is at a higher risk of infection continuing with the breathing tube than what she would be with a trache. ENT also agreed and when they were by the bedside tonight Ally was once again trying to self extubate and was thrashing her head around. ENT said she is probably doing more damage to her airway with the ET tube than what will be caused by the trache. He also said that since she did so well with the previous trache this should be just as simple.
Of course all of this is not what we wanted but I feel very strongly that this will be best for Ally. Shane seems to be having a hard time with this and I think that is mostly because he feels like we are taking a huge step back. In some ways it does feel like that but it also makes me feel like we could finally start to make some progress and begin to work on what we need to do to get Ally out of the ICU. I can not think of the long term effects of another trache (nursing care, equipment, sleepless nights, of course who says I get sleep now!) But I can think of the positive effects, Ally will not need to be dependent on narcotics and sedation, she will be able to sit up in bed and turn her head. We would also finally be able to hold her and comfort her and maybe get to hear her precious little voice. When you look at the positive, wouldn't it be worth it?
Yeah! Ally's biopsies looked good and for the first time since her transplant Ally's steroids have been decreased. She will not have another scope done until next week.
Unfortunately Ally did not have the greatest day and by evening she and I were both falling apart. For some reason she was extremely agitated yesterday whenever she was awake. Numerous times she was pulling on her vent tubing and her new central line. No matter what we did we were unable to calm her down and then she would eventually fall asleep out of exhaustion. It was so difficult to watch her struggle so much and it was the first day she seemed like she was saying "I have had enough"!
Thankfully Gram and Grandmom were here to the rescue so they could stay with Ashley and I could head back over to the hospital late last evening. Ally was asleep when I first got back but then she woke up and we played some games and she seemed to be in much better spirits. Then I helped give her a bath (which she of course hated) and then she was exhausted again so she drifted off to sleep.
As always I am praying for a better day today. I can't keep having these emotional days it is just too draining. Hopefully Ashley and I will get some alone time today and maybe go to the park.
A super quick update before I leave for the hospitl. Ally had a busy day yesterday, she lost her right IJ line that had numerous meds running. So she had an ultrasound done to check her venous access and a new line was placed. Of course she had to be sedated and paralyzed for the line placement so all of her vent settings were increased.
On a good note her scope looked good so hopefully the biopsy results will be good too. I will update more tonight.
Sorry for yet another long delay in the updates. I guess the reason I have not been updating is because of my frustration. Ally has now been in the ICU for 57 days and although this is still a relatively short hospital stay for her it feels like a hopsital stay that is never going to end. Ally has struggled through another week on the ventilator. At my last update Ally's settings had been weaned down and we were getting ready for CPAP trial. Ally did a trial on Thursday and ended up collapsing her left lung again. She began to have difficulty maintaining her oxygen saturation and her vent settings were increased significantly.
At this point I am concerned that Ally is just too weak to come of the vent and any time her body becomes stressed (rejection, fever, infection, big belly, poor nutrition) she will have a set back in her respiratory status. Talk of a trache has been mentioned again and if it was my decision I would opt for the trache. I think if Ally had the trache she would be in better spirits because she could communicate with us and sit up and interact. However, transplant is not ready to commit to the trache because it could potentially be another source of infection since Ally is so immunosuppressed.
Ally's bowel is the next issue. The stool from her ostomy has been extremely watery and feeds have been reduced to a minimal amount (5cc/hour). She was also started on immodium and benefiber which have been helping. Her bowel has not fully recovered from all of the rejection episodes. She will have another scope and more biopsies done tomorrow. If we could increase Ally's feeds we could improve her overall health and in return may be able to get her off the vent.
All around it was a very emotional week. Ashley (and mommy too) had a couple of breakdowns this week. Ally also seemed frustrated and had a couple of days were she was crying. I think the combination of exhaustion and frustration made for a bad week. Ashley and I took a much deserved break (mostly for my sanity) this weekend and came home. It has not been a restful trip at all but it was great to be at home and to see all of our family. Grandmom, Pop and Gram kept Ally company while we were at home. Even though I have been away for Ally less then 48 hours I miss her terribly and feel out of touch with her. Ashley and I will be headed back out to Pbugh after church.
I will update tomorrow with some news from Ally's scope and biopsy.
The last two days have been pretty good for Ally. She basically has her vent settings weaned down to were she was a couple of weeks ago just prior to being extubated. Her chest x-rays have been looking better and her bowel scopes and biopsies looked good as well. She also had a CT scan done yesterday just to check out her abdomen (or maybe just to waste more insurance money). There was really no reason for the scan the docs just wanted to make sure there are no areas of fluid collection in her abdomen before they stop some of her antibiotics. Of course her white count has still been elevated so they will keep her on the antibiotics until her count is in the normal range.
Ally spent the majority of the day sleeping which always concerns me a little. I guess I can never be happy. I worry when she doesn't get enough rest and I worry when she sleeps to much :( She did get a chance to watch some of the videos on her website and I caught her smiling. She also needed to have her ostomy bag and belly dressing done twice today so that definitely kept her awake. Her belly looks fantastic and if she keeps granulating tissue at this rate, her belly should be closed in another month!
The key now is to continue to get her stronger so she does better with extubation the next time. I also think she should be doing longer CPAP trials on the vent so that we are sure she is ready to be extubated. There has been no talk of starting CPAP trials yet. I definitley think she could still use a break for another day or two.
Ashley had a great day today. She went to her classmates' house (a boy and girl twin) and had a wonderful time. Their mother also told me that Ashley found something new she liked for dinner, Salmon! My daughter, who last week told me she couldn't eat the bread that I made her sandwich with because "it had stones in it" (most of us would have called it grain but Ashley insisted that they were stones). Not only did she eat the Salmon but she had three helpings. So I am sure that they think I don't cook anything healthy and they probably also think I am starving her! Oh well, she asked if I could get the recipe so we will see how much she likes it when I make it.
Well Ally worked as hard as she could but ended up wearing herself out. Around 4 am the ICU team called to let us know that they were reintubating Ally. Yesterday Ally's left lung had collapsed again and she just couldn't breathe effectively with out it. By late last night and early this morning her blood gases looked horrendous and there was no choice but to intubate. She seems so much more comfortable on the vent and at least now we can clear her secretions.
Her white count is very elevated today so they are a little concerned about pneumonia. She will be pan cultured today and we will wait and see if anything grows. She is already on broad spectrum antibiotics so hopefully they have her covered. Her blood gases have improved this morning therfore, some of her vent settings were weaned. I am sure she will be spending at least another week on the vent.
Ally also had a scope done this morning and we should have those results by the end of the day. OT also came by to see Ally and she threw all of the toys at the therapist, so at least she is working on her strength! Since her respiratory status is stable on the vent, feeds are going to be restarted at 10cc/hour.
Not much else to report. Please pray for Ally's strength.
I know it seems like forever since we updated and I can't decide if it is laziness that has kept me away or the craziness of my life! Ally has really been working hard the last couple of days. She has been trying her best to stay off the vent even when some of the docs were wanting to intubate again.
There seemed to be a big difference in opinions between the attending docs and the fellows in the ICU on what the best course of action was for Ally. The attending and her wonderful nurses wanted to see Ally stay on the CPAP machine as long as she was not getting worse. A couple of the fellows thought she should just be intubated since she was not getting any better. Thankfully she ended up staying on CPAP and for now will continue to work on getting stronger.
I got a great look at her belly yesterday and I can't believe how much her wound has healed over the last week (thanks to not being on steroids). Unfortunately some of the cells in Ally's biopsy looked a little abnormal so she was started on high dose steroids again. Her transplant doc said that it did not necessarily look like rejection but it did concern him enough to start treatment. She will be scoped again Monday or Tuesday. The GI nurses that help with Ally's scope are quickly falling in love with her and are now bringing her little presents everytime they come to see her!
On and off Ally has been awake but she is not very happy (not that I blame her). It has definitely been another difficult week of watching her struggle. She does seem to be doing okay with some of her narcotic weaning so that is a positive.
Ashley had a good week at school. One of her fellow classmates had a birthday and she got to be a helper in the kitchen to bake the birthday cake. She also went to a birthday party yesterday for a little girl in her class. They watched "Snow White" at a local childrens' theater and got to dress as their favorite princess. It was a long week at school but I know she is enjoying it.
Hope everyone is doing well. I miss everyone at home especailly my family. Ashley and I are hoping to come home next weekend for a day or two. My mom and dad will be staying with Ally in Pittsburgh.
Well so much for the good updates. Although things could always be worse so I won't complanin too much. Ally had a very bad night last night and ended up going on Bi-pap. A chest x-ray showed that her left lung was completely whited out and her blood gases were looking pretty bad. Thankfully she is tolerating the bi-pap and her chest x-ray from this morning looks a hundred times better than the one taken last night. Hopefully she will get by on the bi-pap and not have to be reintubated.
Since she had so much respiratory distress her feeds were stopped. She has been asleep almost the whole day and I am not sure if this is because she is exhausted from all of the breathing she is doing or if it is her way of dealing with having to wear the bi-pap mask.
Ashley had a good day at school and helped make a cake for a fellow classmate's birthday. After school Grandmom and I took her to the park to work off some of her extra energy. Grandmom said that she would have to head back to the hospital to use some of Ally's oxygen after all of that running around (remember she is older now). Speaking of people who are older today is Shane's Dad's birthday. Happy Birthday Pop:)
Ally is still holding her own. As long as you don't count high flow nasal canula and about a million types of nebs not to mention enough chest pt to probably leave bruises. She was awake today in short spells but did a lot of sleeping. I am hoping this is just because she is tired since she has to do all the breathing on her own. She did seem comfortable most of the day but she still needs to have more productive coughing so that she can clear her secretions.
Ally also had a scope done today and Dr. Kyle was pleased with how things looked so hopefully the biopsies will look just as good. Her feeds were restarted at 10cc an hour and they will probably go up another 5cc tomorrow. Dr. Kyle also said it would be fine if Ally wanted to start drinking some water and I think that was the highlight of Ally's day:) She was able to vocalize her requests a little more today mostly "no" "off" "up" "water" "Mickey" and "go" (which she told her nurse when she wanted to suction her mouth). Definitley 3 yr. old appropriate behavior:)
Happy Birthday Grandmom and Happy 5th Birthday Anthony (I don't think Grandmom would appreciate it if we made her age public knowledge but if you want to guess it falls between
54 and 56!)
Yeah!!! Ally did it she was extubated around noon today:) Even though this is a big hurdle I am holding my emotions in check to see how she does with her breathing over the next 48 hours. She did very well initially but now seems to be having some difficulty clearing her secretions.
Overall she had a great day. She was awake most of the morning and is perfecting tooth and gum care. She has had a mouth swab in her hand or in her mouth constantly the past three days. I think she likes this because she can do it all by herself. Plus she likes the water that they dip it in. Imagine how awful your mouth would feel if you had a tube in it for 6 weeks, nothing to drink, and then twice a day they sprinkle powder in it. (Ally's rejection meds are in a capsule that they open and sprinkle the powder under her tongue.)
Ally also tried to talk some today. Mostly just a whisper since she is very sore and hoarse. However she manages to be very demanding in her own ways. She points and vigorously shakes her head and thankfully has a lot of patience with us while we try to figure out what it is she wants. I am hoping tomorrow she will be able to vocaliz her needs a little more.
Ashley had school today and she also had her first dance class tonight. Which we managed to be 10 minutes late for but she still had fun. It is tap dance and she was already telling me that her shoes were not that loud so she thinks she needs to practice at home. We are also busy making some plans for her 5th birthday (wow!) which will be here in less then a month.
Hopefully tomorrow's update will be all good news!
Not much going on here we are just waiting for Ally to get a little stronger so she can be extubated. She had two CPAP trials yesterday and two today. I am really hoping she be off the vent in the next two days. She was awake for a while today and seemed fairly pleasant. She was determined to sit up in bed and Dr.Sindhi, her surgeon, was at the bedside when she did this. He was happy to see her so determined and he seemed pleased with her progress this week. She was finally restarted on feeds so hopefully this goes smoothly.
As all of you know Shane and I are huge advocates of organ donation and organ donor awareness. Everyday about 18 people on the national waiting list will die while waiting for organs. Yesterday one of those people was Brady. Brady was born premature at 25 weeks old on September 6th 2006. Brady held out to his one year birthday and then his little body could hold out now longer. Please keep Brady's family in your prayers especially his parents, Laura and John.
Remember to talk to your family and let them know your wish to be an organ donor.
Sorry for yet another long delay in the updates but I kept hoping that my life would get less crazy this week (why would that happen!) and that I would have time to update. Thankfully, Ally was not the one keeping me so busy this week she had a relatively good week. My mom and my girlfriend Katie came into visit this week and it was great to see Katie and as always my mom was a huge help with both the girls. Currently Ashley is busy playing and catching up with her Gram who came in last night with Shane. The past two weeks it has felt like we have a revolving door:)
Like I said Ally's week has been pretty good. She has been awake a lot more and seems to be fairly content when awake. She has been watching videos and managed to squeeze in a manicure and pedicure (thanks to her night nurse). She has finally finished the high dose rejection meds that she was on, which is why I think she had some good days this week. Yesterdays he seemed more agitated but they had also weaned her fentanyl significantly. It was obviously too aggressive of a wean because she became so agitated that her vent settings needed to be increased along with increasing her methdone and then later back up on her fentanyl again.
Ally has been strong enough to do some CPAP trials on the vent (this means she does not get a ventilator breath but the vent delivers pressure when she takes her own breaths). I think the rejection last week really set her back so if we can just keep her rejection free I think she could be off of the vent in the next few days. She had another scope and biopsies done yesterday afternoon so we should have those results soon. That was her third scope and biopsy this week. The other scopes looked better than last week and the one done yesterday looked better than the one done Tuesday so hopefully the biopsy looks just as good.
Ashley had her first few days of school which went well. She seems to like it and was excited the first day. I think the school will be a good fit for her and the rest of our family. The staff is wonderful and extremely helpful too. She was already invited to a little girls birthday party next weekend so that will be exciting. It is a princess theme so she told her Daddy to bring out her Ariel costume!
It was a very difficult week in the ICU for some of the other patients and their families. Although Ally has had a tough road she has always made it through, over or around any bumps in the road and we know she has been one of the lucky ones. We are truly blessed for every moment we have had with her good or bad because in the end she is still here with us and that is all that matters. I also know we are so fortunate to have the support system that we do. I have met two other mothers since I have been in Pittsburgh that have children in similar situations to Ally. They both are mostly here alone and are facing these obstacles on their own. I pray for their strength. I pray that they always have their children.