By some small miracle, and Allys strong fight, she pulled a complete 360 degree turn for the better over night!!! She was talking, smiling, and out of bed for the first time all week. We still have no answers to what is causing the distended belly or fevers and breathing issues, but to see her in better spirits feels like we got by another big hurdle! Ally has not been that sick since maybe transplant. So today is a good day, and for that we are thankful!
Ally may be able to leave the PICU unit tomorrow, and be put back on the floor tomorrow. I'm sure we will not be coming home to soon, since she is still on 5 different anti-biotics.
We will update again soon with any new information. Thanks for those prayers, keep them coming!
Its been now over a week in the hospital, and we still have no answer to what is making Ally so sick. She had a CT scan or her head, chest, and abdomen yesterday, along with an ultrasound of her left leg which was swollen and cold. Today, she had a chest x-ray which was much worse than the previous days film. She is being tested and treated for every known infection and virus now.
Ally also had an EKG of heart because her heart rate has been extremely high. She also has had alot of small blood vessels breaking all over her body due to the high blood pressure.
Ally continues to only get worse as the days are passing. Today we were forced to leave the floor, and were admitted to the PICU!! Ally's breathing is not getting better. She is on about 5 to 6 liters of oxygen. If she continues to go down this route, the next move will be bypap, and then possibly moving to a ventilator.
Please pray she can fight this battle and remain strong enough to get over these issues. These are scary times, and Ally needs all the help she can get right now. Please keep her in your thoughts!
Sorry for the long wait on the update, but its hard to leave the room when she is so uncomfortable and in pain. We will update again soon with any news of what is causing Ally to be so sick.
Well once again I am wishing I had more to report but we still don't really know what is going on with Ally. Thankfully, she does seem to be having a much better day than yesterday which isn't saying that much because yesterdy was such a bad day. Ally also has not had a fever since yesterday afternoon so I am hopeful that the fevers have at least stopped.
The docs have switched her antibioitics again, this time to treat an inflammation type infection in her liver. The last two times Ally had labs drawn her liver numbers were very elevated and her abdomen is still very firm and distended. She also had pretty much stopped stooling yesterday and was gagging and retching all morning. X-rays were done to rule out an obstruction in her bowel and they showed no change so that was good. Her chest x-ray showed that her lungs were still a little hazy looking and she is still needing a liter or two of oxygen.
Also, Ally was so uncomfortable and in so much pain that they had decided to give her morphine. This certainly made her more comfortable and she was awake and out of bed for a few hours but she was still miles away from her normal happy self. The docs held off on labs today to try to prevent her from becoming more anemic. If her liver enzyme levels don't look better by tomorrow than they will probably re-scan her (CT) to make sure nothing new has developed since the scan that was done on Monday.
Please pray that tomorrow Ally's liver enzymes will come down and that each day she will feel a little better and get a little stronger.
At this point I really wish I had something to report but unfortunately Ally is still being a mystery. Yesterday evening I had hoped she was getting better because she was awake for a little while and even playful but today she was the most lethargic out of all the days and only awake for about one hour.
The CT scan showed nothing which is good and bad because it doesn't help us figure out what is wrong. We had thought Ally's fevers were diminishing and much lower but today she has had two temps and her latest one was 104. Also when she is awake she is extremely irritable and seems to be having a hard time comprehending things and focusing. She has also been needing more oxygen and they were going to do another CBC because she may need to be transfused again (she was just transfused on Saturday).
The docs seem puzzled and Pittsburgh didn't have any additional ideas so we will kind of wait and see. For now they changed her IV antibiotics again and also started her on an antifungal IV med. Hopefully something will help and tomorrow I can report better news.
Ally still is not much better than the last few days. Fevers are not quite as high, but none the less she is still running temps. Today her belly looks a bit distended, so we are going to do a CT scan of her belly first thing Monday morning. No one can figure what is causing the fevers, since all her blood cultures have been negative.
Ally was tested for the flu and other virsus, and they all turned up negative. She had chest xrays and that also showed nothing. So we will continue to search for the cause of fevers and discomfort.
We will update again with any new updates. It looks like we will be here for awhile.
I think Shane and I have both been trying to delay the inevitable. We thought by not reporting any news we could keep things at status quo but, needless to say Ally was admitted to duPont earlier today. We actually felt like we had such a long healthy spell at home but the resident in the ER was quick to point out that it had only been five weeks since our last hospital stay. Our dear friend John Maicher had surgery earlier today (and thankfully is doing very well) so we think Ally just wanted to be here with him.
The past month or so has been great. Ally has truly looked and acted better than ever but all good things must come to an end. Ally began having fevers yesterday and due to the fact that her last few infections have been so severe, her doctors thought it was best to play things safe and admit her right away. As long as her temp is not up Ally is acting like her usual active self. Her hemoglobin is low as usual but she does not need blood (at least not yet). Other than the fever she really has no other symptoms so we will see tomorrow if the cultures have grown anything.
We also wanted to thank everyone for another great fundraiser. Ally's beef and beer was a huger success and Shane, myself, and the girls had a wonderful time. Both Ally and Ashley requestted songs and both were excited when they heard their selections played. It was great that they could be there and take part in such a special event.
I made a couple of announcements at the beef and beer that I wanted to mention again. First we will once again be getting a team together for the Gift of Life's Dash for Donor Awareness. This is a 5K or 10K run or a 3K walk. Last year we had a few runners and than they all joined us on our 3K walk. This event takes place in front of the Philadelphia Art Museum on Sunday April 22nd. If you are interested in joining our team please email us at firstname.lastname@example.org. Once we register our team, individual participants can start to register(we will add the link at that time).
The second announcement we made was that Ally has been chosen to be the spokeschild for the Corvettes for Kids fundraiser. This event takes place every August and has helped to releive some of the financial burden that families with medically compromised children may face. Since I am currently not at home I do not have all of the information to post about this event. But, I will soon be adding a link to their website and adding some more info about this event. In the meantime if you would like to help in any way with this event (volunteer, phone calls, donate something for silent auction) please email us at the address listed above.
Sorry for such a long update but that's what we get for being lazy with our updates. We'll try to post an update tomorrow to let you all know how Ally is doing. Please keep John in your prayers (pray for no more fistulas!).
Well as usual the last few weeks have been rather busy and there has been little time to update. Thankfully, the last few weeks have been fairly uneventful (unless you count our exciting trip to Pittsburgh or should I say our eventful trip home).
Ally has just been wonderful latley which, we absolutley hate to say because it always seems to be such a jinx. But, she really has been acting and looking better than she has in over a year or so. She is all but running in circles and talking our ears off. She even sings non-stop and has her own little headphones. She hates the cold weather and wants nothing to do with the snow. Ashley on the other hand could care less what the temperature is and would spend the whole day playing in the snow.
Last Thursday we headed to Pittsburgh with Ally for a checkup. My mom and a friend of mine went along for the trip. The drive out was fine and we had no weather or traffic problems. Ally's appointment went well and they were impressed with how well she looked. We discussed double listing Ally for transplant (Shane and I were thinking about taking Ally to Boston Childrens Hospital to be double listed for transplant so that she would be eligible for organs that became available in Pittsburgh's region and in Boston's region). Pittsburgh agreed that Ally could be double listed but, due to Ally's complex medical history, they would prefer it if we went to another more established program. The had reccommended University of Nebraska if we were going to double list. Needless to say we are going to hold off on that for now. Pittsburgh also told us that Ally's name has come up a couple of times for transplant but that they just have not had the ideal donor yet. So for now we will continue our wait.
During our trip we stayed at a Marriott Residence Inn that was about 1.5 miles from the hospital. They have one bedroom type apartments so we are thinking that is where we will be living when Ally gets transplanted. They also have a hospital shuttle that runs all day from 7am to 9:30pm so that would eliminate they hastle and cost of parking at the hospital. We also got to visit with our friend Lynne in Pittsburgh. Lynne had a very special birthday on Valentines Day and we got to be part of her surprise party, complete with a singing telegram delivered by a gorilla that Ally was completely terrified of! It was a fun evening and we were glad we could be there to help celebrate Lynne's birthday.
Now, onto our "uneventful" ride home. You would think after all this time I would learn my lesson but, nooooo I had to go and jinx myself once again. We were just past the 1st Harrisburg exit of the turnpike and I was thinking we were making great time, when I said "you know I really think this is the most uneventful trip I have ever been on with Ally". Thirty minutes later we were at a stand still on the turnpike and we would stay that way for the next 3 hours. Ally, of course woke up from her nap fifteen minutes after we stopped moving. Thankfully, it really wasn't all that bad, we kept each other entertained or I should say I kept everyone entertained (I am not typing the story behind that, you'll have to ask). We ended up having to exit the turnpike in Lancaster due to an accident closer to the Reading exit. Finally, we got off the turnpike and luckily found a gas station close by (we had been sitting on empty). However, after that there was no smooth sailing, we were detoured and driving at a crawl until we reached Reading. Needless to say after 10 long hours I pulled in the driveway.
I did learn one very important lesson from this trip, well maybe more than one. Shane and I had always hoped that when we would get the call for Ally's transplant that we would have time to drive to Pittsburgh instead of flying (we have a chartered medical flight set up but it is a huge expense). However the average window period for an intestinal or multi-visceral transplant is usually six hours, if your lucky maybe eight hours(the window period is from the time you receive a call for transplant until the time you are wheeled into the OR). So at least now I know that we would never be able to take the chance at driving it would just be too big of a risk.
As I said in the beginning it has been a fairly uneventful few weeks! Don't forget Ally's beef and beer this weekend. We are down to a limited number of tickets (probably about thirty or so). If you are definitely planning on going I would recommend getting your tickets this week. Tickets are available at Bause's Super Drugstore or by callling Mary Kay at 610-367-6693. Whatever tickets are left will be available at the door. The beef and beer is from 6-11 at Keystone Fire Co., Boyertown. Music is by Bruce Miller and hopefully Ally and Ashley will be making a guest appearance in the beginning of the event.
Take care and here's hoping for another uneventful week.
The celebrating just keeps on going. We started Ally's birthday week on Sunday when she had a Superbowl birthday party. She even took cupcakes to Sunday School, not that she ate any but the other kids enjoyed them. She was so proud of herself all day she kept telling everyone that she was a BIG GIRL!!!
By far the most exciting moment was when she blew out her birhtday candles. It sounds like such a small thing but the past two years because of the trache this was not possible. I was nearly brought to tears seeing her mark this milestone in her life by completing such a simple age appropriate task. I had a flash of memories from the past three years of all that she has accomplished (big and small) in her short life.
Fast forward to today, Ally's real birthday and I would have to classify Ally as a naughty girl (typical 3yr old) not a big girl. Unfortunately last night we did not have a night nurse so as usual I was short on sleep. Ally wanted no parts of sleeping upstairs in her sister's room. After screaming on and off for twenty minutes I moved her down stairs and I camped out on the couch for the night. Thankfully the girls must of sensed I was worn out so after their bath and Ally's numeorus dressing changes the girls played nice. I was beginning to think that for a bad night the day was turning out pretty well.
Well all that changed when nap time rolled around. Ally once again wanted no parts of napping. and after 15 minutes of crying I assumed she had fallen asleep. Obviously not because a 1/2 hour after the crying had stopped she was screaming her head off and I found her in a puddle of blood. Instead of napping she had decided to pick apart her bag around her g-tube. She had also ripped her skin off and her stomach mucosa was bleeding pretty good. She also had blood in her hair, on the wall, streaked down the crib and on the floor. Needless to say it was a bad afternoon, ending with both Ally and I in tears. Ally needed to be bathed again, her bag and central line dressing done for the second time today and I had to scrub down the crib, the wall and the carpet. Not to mention I just started my third load of Ally wash for the day!!! Sorry to vent but sometimes Ally makes me feel like I am the best and worst mother all at the same time and today has been one of those days.
So now instead of a nice birthday celebration tonight, Ally will be going to bed early and I will be having a large glass of wine (I hope!) Ally's favorite songs are "Hard Knock Life" and "Tomorrrow" both from the movie Annie, I think the first one pretty much sums up the day and the second gives me hope that tomorrow will be a better day.
P.S. Tickets for the beef and beer are starting to go fast, so don't wait till the last minute if you want some. The beef and beer is Saturday February 24th from 6 to 11 pm at Keystone Fire Co., Boyertown. For tickets contact Mary Kay at 610-367-6693 or tickets may be purchased at Body Borneman Insurance of Bause's Super Drug Store.
I'll try to get Shane to put up some pictures later this week. We even have video of Ally eating birthday cake!
Ally ran fevers until about Saturday afternoon. Since then she has not had any fevers. She came home this afternoon and is doing fine. We still don't know what caused the fevers. All of her 5 blood cultures this past week were negative. Ally was also tested for other viruses such influenza, and they were all negative.
So for now we wait to see how long we can make it at home. We are hoping to stay home until the weekend, when we will celebrate Ally's 3rd birthday!!
How things change so fast from one update to the next.
Ally was admitted to duPont hospital yesterday for high fevers. She was started on anti-biotics and cultures were drawn. We most likely will be spending the weekend at duPont. From the pattern that is being set over the past few months, it looks like we can only stay out of the hospital for about 3 weeks.
As much as these infections occur, we can never treat them lightly. The infections are what could stop us from transplant if we were to get the call while in the hospital, and if we get an infection that is not treatable, our fight would take a huge turn for the worse.
So for now we go back to living out of our suitcases and hanging out at duPont.
Wanted to do a quick update to say that things have been status quo around here with Ally. Which is great but it does always make me feel like it is the calm before the storm. Ally has only been off of her IV antibiotics two weeks but seems to be doing okay. I scheduled another check up for her out in Pittsburgh for the middle of February, so hopefully no snow!
Anyhow I just wanted to keep you all informed that there is really nothing to inform you about.
Don't forget Ally's beef and beer on Saturday February 24th from 6 to 11pm at Keystone Fire Co., Boyertown. Music will be by Bruce Miller. Tickets are $20 per person. Tickets are available at Bause's Drug Store and Body-Borneman Insurance. You can also call Mary Kay @ 610-367-6693, LuAnn @ 610-367-0363, or email us @ email@example.com for more ticket info.
Take care and hopefully I can update again soon with nothing to report!
Hope everyone has recovered from all the hustle and bustle of the holidays. I know that Ally has certainly made a full recovery. She has been doing great since we have been home and seems to be right back in the swing of things. We made sure to get her out of bed and walk a little during everyday of her last hospital stay. So this time she did not regress with her walking.
Yesterday I had Ally at duPont for a follow up appointment. Which basically means nothing was done and it was mostly a waste of time. I had done labs on her in the morning so they didn't even do that! Oh well what is one more trip to duPont. Ally will finish her IV antibiotics on Monday and she will begin on some new oral antibiotics to try and help control the bacteria in her gut.
Also I wanted to let everyone know that there is going to be another Beef and Beer for Ally. This will be the third beef and beer held for Ally. Shane and I had such a great time at the previous two events so we are definitely looking forward to this one too. Needless to say since having Ally our social calendar has been pretty much non-existent. This event gives us an opportunity to get out and have some fun. All the information follows:
Beef and Beer for Ally
Music by Bruce Miller
Saturday, February 24, 2007
6 to 11 pm
Keystone Fire Co. Boyertown
$20.00 per person
For tickets call Mary Kay at 610-367-6693 or
LuAnn at 610-367-0363
Tickets will also be availabe at Bause's Super Drug Store and
at Body Borneman Insurance
Any other questions please email us at firstname.lastname@example.org
Just a quick update to say that Ally made it home late this afternoon. Ally had a good day today and seems back to her normal self. The area around her G-tube site has finally stopped bleeding and her hemoglobin is holding at 9 which isn't fantastic especially since she was just transfused but it is good enough for now. Unfortunately her liver numbers did jump some today so the docs thought it best to increase her rejection meds and follow up with labs tomorrow at home. Hopefully this as all just a little fluke from Ally being so sick (this has happened before and turned out to be nothing.)
Hope everyone is recovering from the busy holidays!
Ally did not come home today. The doctors changed some of her meds, and wanted two doses given in the hospital before going home. We should be able to come home tomorrow! We will update soon with any new information.
We added photos and some video of our Christmas in the hospital. Enjoy!
Merry Christmas from duPont!! Well, even though we had to be in the hospital for Christmas, we made the best of times. Santa paid a visit to both of the girls and both were very excited to open gifts this morning in Ally's room.
We could of came home today, but made the decision to stay. Ally has had negative blood cultures for the last 4 or so days now. She has continued to have small temps. but they are also on the decline. We think that she had some kind of viral bug on top of a line infection.
On Saturday, we went home to pack more clothes and stuff for the rest of the week, and while at home Ashley started throwing up. We got her cleaned up, made our way back DE, and along the way Ashley again was sick in the car. Lucky for us we were prepared with a bowl!! Ashely remained sick for about 12hrs, into Sunday. After Sunday morning she was fine. We think Ally may have gotten this same viral/stomach thing like Ashley. Instead, with Ally it presents itself in a more complicated manner.
Today Ally has had alot of blood out in her bag and diaper. We think a few people have caught the side of her stomach while emptying her bag, causing a small injury to the stomach area. Her belly was also slightly distended, so we had transplant look at it, and some xrays done to make sure everything was ok. So far the xrays show nothing! Ally was also on oxygen over the weekend because her SATs were low. As of last night she has been fine without the oxygen.
So for now we are going to see how tonight goes, and make a decision tomorrow whether or not to go home. We do not want to go home for a day, only to turn around and come back. It takes too many hours to clean and pack our hospital and Ronald McDonald room. . .come home. . .unpack, only then to have to return. We have done this before, and its not fun. It was actually nice to stay together today as a family and not worry about all the holiday running around. Not that we wouldn't want to be home, trust me, but Christmas turned out just fine the way it did!!
Hope everyone enjoyed their day as much as we did.
Yesterday Ally recieved some blood due to some of her numbers being so low. She also continued to have high temps due to the infection in the line. We started given her Motrin, which seems to be helping her be comfortable for a least 4 hours or so.
We were told yesterday, that she needs to have a day without a temp, and one negative blood culture before she can come home. That leaves today as our only shot at making it home on time for Christmas! My guess is that there is no way we will be home. Right now our focus is saving the line. She has only had the line for 7 weeks. If we continue in this direction, it spells big trouble!
Our plans are pretty much made to spend the week here, including Christmas. The way we see it, as long as we are together as a family, that is all that matters. The girls have been having fun with all the activities for the kids here, in fact Ashley was on the 11 O'clock news last night playing her harmonica during a group lesson at the child life center in the hospital. As far as seeing family, well I guess if they really wanted to see us, they could visit. Our focus is keeping Ally healthy, and making a Merry Christmas for both the girls!! I'm sure our Moms and Dads will be here to keep us sane ;)
We will update again later today or tomorrow, and maybe even later this week, we will try to include video of our Christmas morning with the girls.
Well unfortunately things have gone from bad to worse for Ally. She continued to have a fever all day today and really slept pretty much the whole day. We managed to get her out of bed for a little this evening and she sat on my lap.
Her labs from last night were improved. Both her hemoglobin and her platelets were up. They both are still on the low side but at least they went up instead of down. The worse part is now her blood culture has grown bacteria. So we know we will not be going home before Saturday and that is if we can get a negative blood culture. As bad as Ally looked today I would say that so far the antibiotics are not killing the bacteria.
At this point we have made all our plans for Christmas in the hospital. We will make the best of it and the girls understand that Santa will find them wherever they are. Now I am just hoping that even if we have to be here hopefully Ally can at least feel better than she did today.
We will try to update again sometime tomorrow.
Ally the last few days has been running a temp. Monday we took blood cultures to be tested, and they came back negative so far. Ally's palettes are low, and last night she ran a temp of 103.8. We called duPont this morning, and they told us that they are admitting us to the hospital, later this afternoon. We need to find out what is wrong. Could be viral.? Who knows. What I do know is that if we can't figure this out in a few days, we will be spending Christmas in the hospital. Two little girls are going to be very disappointed. I guess we should just come to expect these things.
Ally's blood cultures from this week have come back negative. She has not had a temp since Monday. We are hoping we can make it past Christmas before the infection makes its way back. We really want to be home for Christmas. That in itself would be the best gift we could ask for.
Ally and Ashley are looking forward to tomorrow. We are taking them to see Santa and pick out our Christmas tree.
If your interested, tonight on the Discovery Channnel (not health) at 9 p.m. is a story of a young girl we know similar to Ally. Here is the description of the show.
Surgery Saved My Life
Gretchen Miller has not eaten a meal for over a decade, living instead on bags of fluid fed intravenously. Her weight dropped to 67 pounds. She has to endure a six organ transplant in a 20 hour operation but the organs can only survive 9 hours.
This should give us some idea of what to expect in the near future.
We also learned today, the little girl who went to Pittsburgh before Ally did last December, and was transplanted with a small bowel in March and we had the chance to meet in June, died this week. News like this makes you wonder what fate holds for us.?
It also makes you realize we should all enjoy our time together now!
We will update again with any changes to Ally's health.
Ally has had a few great weeks this past month. She has become much stronger and is getting very good at walking. We had a nice Thanksgiving, and alot of family time these past few weeks.
We have not heard any news as far as transplant goes. Still waiting. In fact in another week or so, it will mark the 1 year anniversary of being on the waiting list.
As far as Ally's health, well I wish I could say all is well. But as of a few minutes ago, she was running a temp. She has not been herself the past few days, and I'm sure we are looking at days in the hospital soon. It seems we can only spend about 3 weeks away from the hospital before having to go back for infected lines. So we are going to draw blood cultures tonight and drop them off tomorrow morning to get tested for a line infection.
Continue to keep Ally in those prayers! I know we haven't updated lately, but when there is no update, usually that means things are ok. We will continue to keep you posted on this weeks events!
Ally is doing ok this week. She continues to need her blood pressure monitored, and medicine to control it. A week in the hospital, has also had a noticable effect on her physical strength. Ally is not wanting to walk now, and struggles more to stand. It's amazing how a week in the hospital can take such a toll on her strength. The therapist said not to make her work so hard right away. We will have to work up slowly again to building her strength in her legs again.
Enjoy the new photos, and we will update again soon with any new changes.
Ally was able to come home yesterday! The fevers stopped, and all her issues without TPN subsided. The only issue she has yet is that her blood pressure has been high. This can been from the TPN also, and something we need to watch the rest of this week. All in all, it was a tough week for all of us, but we pulled through it. Ally is one tough little girl!! How she does it, I'm not sure. All your thoughts and prayers, this past week were greatly appreciated. I know it's one of the things that keeps us going, and remaining strong and positive. Thanks!
We will update again soon, and I will try to get the Halloween photos up this week.
Ally went to the PICU last night because her magnesium and calcium levels were extremely low. So low, they were afraid she might start to seizure. She was really sick and uncomfortable last night. Her temps continued through the night, reaching as high as 102.
This morning Daddy stayed with Ally, while mommy went to work for a few hours. Ally was better today. She has not had a temp. since 4 a.m. and we think we have her magnesium and calcium stablized. The reason for the drop was not having TPN all week. The pituitary gland in her brain was slow to act to the change without TPN. The gland becomes lazy, thinking it will get the minerals it needs. When she didn't get the TPN, we had issues. Ally should of been weened from the TPN.
As of now, we are waiting to see what some of the blood cultures continue to show. We still need to know why the temps continue to occur. There was mention of going home tomorrow, but we know better to get excited about that.
Ally recieved her central line today. I'm not sure why she got it, because she still had a temp. After surgery, Ally is still not herself. They ran some blood cultures after surgery, and they came back not so good. Ally may need to be transfered from the floor to the PICU. We will update again soon with any new information.
Ally ran another fever this morning, and the placement for the central line was canceled for today. If she can remain the rest of tonight and tomorrow morning without a fever, she will have a line placed at noon tomorrow. So far today she has not had any temps., but just awhile ago she started feeling warmer than usual.
Early tomorrow holds all the answers to whether or not she gets the line. Please pray that she gets this line to start TPN soon. She needs this in order to survive! This week has been long, both stressful and time consuming. Please excuse us if we have not received or answered your emails or calls. Maybe after tomorrow we can catch up on everything else around us. We will update again soon.
As of right now Ally is scheduled to have a new line placed tomorrow. This morning I was told the line would not be placed before Friday because Ally had run a temp all day yesterday and spiked a temp again this morning. This afternoon they changed their minds since Ally did not have a temp all day they felt they should try to place a new line.
Finding the perfect time to place the new line is a little tricky. With out a central line Ally is unable to receive her usual IV fluids (TPN) and therefore is losing weight and nourishment. However they can not place a new line if she still is positive for a blood infection because then her new line will be infected.
Overall she was definitely feeling much better today. Yesterday she did not want to be held or touched she just wanted to lay in bed. Today she was out of bed a lot and even went to the play room for about an hour. Unfortunately, she just lost her peripheral IV so another will need to be placed tonight so that she can receive IV antibiotics, some more fluids, and sedation for the OR tomorrow. It will not be a fun night.
Please pray that Ally can get her new line tomorrow and that we can come home tomorrow evening.
The past week has had its good times and bad for Ally. Ally returned home from Pittsburgh Thursday night very exhausted and tired from the long trip. The doctors there said that they have not had any calls for intestinal transplant for almost 2 months now. Ally is grouped with two other younger children with a blood type AB in our region waiting for an intestinal transplant. Ally being the oldest and having the longer time on the wait list, will put her closer to the top. Her points as of now are 28 out of 40. That's ok, more in the 30's would of been better.
All we can do now is wait, just like we have for the past 10 months.
Friday, Ally ventured out with her sister to do some Trick-or-treating. She had a great time! Pictures will come later this week.
Saturday and Sunday were not that great of days for Ally. As the weekend progressed, the more frequent and higher her temps. became.
Sunday night, was the worst night of the entire week. Of course right before a long day in the hospital Monday. Ally ran high temps. all night long, we lost power at home with the high winds, and somehow got 2 hours of sleep.
Monday at 5:15 a.m. Daddy and Ally made the long trip to dupont to have her infected central line removed. Surgery was at 8:45 a.m. Everything went fine with the removal of the line. It was quite the experience for Daddy and Ally to go at this alone without Mommy around (working). Needless to say after surgery in the recovering area, there were alot of Mommy's been yelled from Ally! As Monday passed, Ally still has not cleared her temps. This is a great concern, mostly because in the past as soon as the source of infection (line) is removed, signs of high temps disappear. Today will tell us more of what is to come. As of last night she was very tired and sick! Please pray these temps and infection clear, so Ally can have a new line placed tomorrow.
Ally is making a scheduled trip today to Pittsburgh for a follow-up appointment. She will return home Thursday night. We hope to find out more at where she is on the transplant list, and get a better idea of her health status.
Yesterday, duPont called and told us that Ally's central line turned up another positive culture. The line will be pulled from her chest and a new one will be inserted next Monday. This means all next week we can look forward to a weeks worth of hospital time. Looks like the girls will yet again spend Halloween at duPont.
If we find out any news from Pittsburgh, we will update with that information later this week.
The past week or two have been really busy. Ashley had her 4th birthday party last week, which turned out to be a great time for all of us. As you can see from the pictures, this year's theme was Ariel!
Ally has been doing ok. Friday we got called to say that her last blood culture was positive. Again with the same bacteria which has caused us to lose her central lines. She is not showing signs of being sick, so we are hoping we caught it early enough to treat with antibiotics before things turn for the worse.
Ally and Ashley are both growing up fast. They both are enjoying the days home together learning just how to be sisters. So many times watching them play together, I wish alot of this hospital stuff was behind us. Knowing what difficult times are ahead, make these days that much more meaningful!
Ally made it home yesterday. She went the last two days without a fever. Nothing turned up positive on her blood cultures, but they still put her on an anti-biotic. She will be on that the next few days. She is back to being her happy self and doing fine. Our job now is to try and keep her that way until the call comes from Pittsburgh.
So much for making it through the surgery without any issues. Ally started feeling very warm last night, and by the early morning hours was running a temp of 103! Needless to say she has been admitted to duPont and will remain there until we can determine what the cause is. Best guess would be a line infection. Please send her your prayers, so that she can return home soon.
Ally had a good nights sleep last night. Of course a night where we thought we could sleep in until 7 or so, we were awaken at 6 a.m. by the nurse taking care of Ally saying she was crying and wanted us by her bedside. By the time we got to her this morning she was fine. The doctors checked her trache site and gave us the ok to go home. The rest of today Ally has been pretty good. She handles pain like a champ!!! I think this surgery was small potatoes too what she is used to going through. None the less, she is still in pain, and will heal within a week or so.
Just a reminder Basket Bingo is this Sunday. Also if you noticed the password has been removed from the site. The reason for that is it became too much work to maintain. Hopefully we will not have any issues not having the password in place.
Ally went into surgery today around 3:00 p.m. The procedure lasted about an hour and a half.
The procedure went well. They had a hard time getting her to wake up, but after a half hour she was ok. She is in alot of pain, and is getting pain killers around the clock for the next day or so. There was alot of crying for Mommy when she finally awoke in the PACU. She also wanted water and wanted to be sitting up. After a few sips of water she closed her eyes and was asleep sitting upright. She didn't want to lay down once she was up, but once we put Disney on, she decided it just might be better to be lying down to watch TV instead of sitting. Sometimes she can be so stubborn, and thinks she can fight anything without help.
As of right now we are waiting to be moved to the floor into a room. The hope is that Ally can come home tomorrow. The night should determine what is in store for us tomorrow.
Today Ally is scheduled for surgery at around noon to have her tonsils removed, and her trache hole closed. She will spend tonight in the PICU, with the hope of only having to stay one day in the hospital. Of course we know better than to expect everything to go as planned, and are packed and ready to stay a few days rather than one. We will update later today, and let you know how she is recovering from surgery.
Ally spent a few days at duPont this week seeing doctors. For the last month she has had a difficult time sleeping. Many of nights she would hold her breathe causing her monitors to alarm. So, after Thursday's meeting with the ENT doctor, it was determined that Ally needs her tonsils removed. The surgery is planned for 21st of September. Also during the surgery she will have her trache hole closed. This should be great! Ally may find she will be able to speak much clearer with this hole closed.
You would think the kid could keep at least something of her own that she was born with. Oh well, whats another surgery and a few nights in the PICU to us at this point?
No news from Pittsburgh. Just waiting for the call. Hopefully the call can wait till after the 21st.
If you haven't had a chance to get tickets to the bingo, please do so soon. Tickets are still available. Thanks again for all the support and prayers.
BASKET BINGO FOR ALLY
SUNDAY SEPTEMBER 24TH, 2006
Bally Fire Company
Doors open at noon, Bingo starts at 1 PM
If you would like a ticket(s) please send a check payable to ALLY HEINTZ RECOVERY FUND for $20.00 per ticket along with a self addressed stamped envelope to: LuAnn Reichart, 356 Mill Street, Boyertown, PA 19512. Tickets will also be available at Bause’s Drug Store and Body-Borneman Insurance, after August 10, 2006. You can also call LuAnn at 610-367-0363 or Jill's mom at 610-367-6693 to purchase tickets.
Happy Labor Day!
Ally made it home from Columbus just fine. The test were done in one day rather than two, because they were having trouble keeping the tube in her stomach. The test results showed that Ally had a very slow moving bowel, which include the whole small bowel, not just a portion. The stomach was aslo slow to empty. This all confirms that Ally does need an entire small bowel and stomach when transplanted. At least now we know we are doing what is right to ensure the best options for Ally's continued health.
On other news we just returned home from a small trip to the mountains. Not very nice weather, but a chance to be with family.
Ashley starts pre-school tomorrow, and is very excited. Ally will soon be able to start Sunday school in the coming weeks and is also just as excited to be like big sister Ashley!
Not much else happening, which is fine by us. Update again soon with any new information.
These past few days and weeks have been busy ones for our family. Ally, Jill, and our nurse left Monday morning for Columbus, Ohio for a schedule trip to have a motility study. The test is being done to see how much function Ally's small bowel really has, and to determine whether or not she will need a stomach when transplanted.
The study was to last two days, but since they had trouble keeping Ally's tube in place inside her stomach, they completed the test in one day. We should learn more today, and what the results showed. Ally and Jill, hope to be able to leave today, and make it home later tonight.
As of right now there has been no news from Pittsburgh. We just are continuing to enjoy our days outside of all the hospitals, and trying to get Ally stronger physically so that she will be ready for the transplant.
I hope everyone had a great summer, and if you have time and a chance we would love to see you at the next Basket Bingo!! Pittsburgh is going to be one major expense hurdle we could use a much help as possible. Between an apartment that will cost $2500 a month, traveling expenses back and forth across the state, and all our everyday bills at home, this next battle is looking more and more expensive everyday. Any help is very much appreciated!!
If you would like a ticket(s) please send a check payable to ALLY HEINTZ RECOVERY FUND for $20.00 per ticket along with a self addressed stamped envelope to: LuAnn Reichart, 356 Mill Street, Boyertown, PA 19512. Tickets will also be available at Bause’s Drug Store and Body-Borneman Insurance, after August 10, 2006. You can also call LuAnn at 610-367-0363 or Jill's mom at 610-367-6693 to purchase tickets.
THANKS for caring about ALLY and our family, as we prepare for our biggest battle yet; living in Pittsburgh and getting through transplant, in the hopes for a full recovery and healthy little Ally!
PLEASE PASS THIS INFORMATION ON TO ANYONE YOU KNOW WHO MIGHT BE INTERESTED IN HELPING ALLY.
Ally and all of us are having a good time here in Ocean City, MD. The weather is nice, and too much surprise Ally is enjoying the sand and ocean. Yester she sat by the water playing in the sand, counting shells in her buckets, and all the airplanes that flew past. It's so nice to see her having such a good time. Ally even went on some rides at the amusement park the other night. I don't think much could scare Ally after all she's been through. She's for the most part very easy going.
We will be returning home on Saturday. A few days on the beach I think is plenty for all of us. Even though we enjoy seeing the girls have fun, doesn't mean there's not alot of work involved to make that happen.