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.
Not to much to report today. Ally spent the majority of the day sleeping. She had an endoscopy done this morning so she had some extra sedation. Her docs thought the scope looked improved compared to last week's scope. Tomorrow she will have another scope done through her ileostomy. The docs will then compare the scopes and biopsies from the last three days and then decide what treatment should be next. Ally's vent settings were not able to be changed much today due to the extra sedation.
Ashley had a chance to visit her new school today. She seemed to like it and I think she is even more excited about starting school. She has three teachers since there are about 22 students in her class. All of the teachers seem wonderful and they went out of their way to make Ashley feel welcome today. Thursday is Ashley's first day and she starts at 8:30 so it will be a challenging morning (of course Ashley is not a morning person so every morning is a little challenging!)
I am praying that Ally can make some steady progress over the next few days with weaning from the ventilator. Today Ally tried to talk numerous times and she becomes so frustrated when she can not tell us what she wants or needs. It is very difficult to watch her struggle and the more awake she is the more withdrawn she becomes. I feel if she had the tube out we could talk with her and would be able to comfort her more. Mostly I just miss my little girl and her adorable, happy, voice. I think Ashley is missing her too because she loves to sit and watch the videos on the website. Please pray for our strength.
I hope everyone had a wonderful Labor Day weekend. It was beautiful in Pittsburgh and we were busy, busy, busy!!! Ashley had fun showing her cousins around the city and generally just enjoyed having someone to play with. Today we got a visit from Ashley's Sunday School teacher from home who has started college at Duquesne a couple of weeks ago. Also my Aunt Shelley and Uncle George stopped in on their way back from Warren, PA (near Erie). So it was nice to see some familiar faces.
Ashley and I also had a chance to visit with two other families. The one family is currently leaving in Pittsburgh while their daughter waits for a bowel transplant. They are here from New Zealand and have four children ages 16 to 3. (Just when you think we had it bad). Matisse is six years old and they have been living here since January when Matisse was evaluated for her transplant. Matisse and Ashley managed to sneak in a couple of games of Go Fish and catch up on the latest High School Musical gossip.
This evening Ashley and I headed out to meet one of her new classmates. I had met his parents last week at Ashley's school's open house and they called to invite us over for a cookout. Ashley had a wonderful time playing with their son Jack and she will feel better having a familiar face at school. It was so nice to sit back and relax a little and comforting to know that we have made yet another friend in Pittsburgh.
On to Ally who has also had a busy weekend. Ally is still having some sedation issues. Which means she is spending a lot of time being agitated. She has longer periods of being awake but is generally withdrawn and unhappy, which of course is difficult for us to watch. On the positive side she seems to be more restful when she is sleeping. Her vent settings have been up and down with very little progress since last Monday. I have noticed that the breaths she is taking on her own seem stronger than what they were last week. However, when she is asleep she hardly takes any breaths on her own and lets the ventilator do most of the work. It is difficult to find a balance where she is sedated enough that she is comfortable but not sedated too much that she can not take breaths on her own. One of the many things I have learned since Ally was born is that an ICU stay is all about finding the right balance.
The newest thing we are having trouble balancing is Ally's Prograf levels (rejection med). Since Ally is being treated for rejection the docs like to keep her Prograf levels high. Needless to say Saturday morning they were through the roof. Her Sat p.m. dose was held and yesterday morning she had a nice level. Her meds were restarted but this mornings level was the lowest it has been since she was transplanted. A low level makes it even more difficult to fight the rejection, so we are still trying to find her right dosing schedule.
Ally had a scope done this morning and rapid biopsies were taken. Tonight I spoke with Dr. Sindhi and he said out of the three biopsies two looked unchanged since last week and the third looked slightly improved. He thought we should continue on the OKT3 rejection med and definitley work on getting her Prograf levels back up. He wants Ally scoped again on Wednesday.
Ally has still been having bleeding from her bowel. The docs were not overly alarmed by this and actually were surprised that it had not begun sooner with this latest round of rejection. She did have some more significant bleeding last night so she required yet another blood transfusion ( a reminder to everyone to donate blood if you can!)
Well that about sums up the weekend, I guess this is why I shouldn't take a break from updating because then the updates get too long! This week will be busy too (aren't they all). My Mom and my girlfriend Katie are coming to visit tomorrow so that will be nice. Ashley has a visitation day at school tomorrow for just an hour and then has her first day on Thursday. If you ask Ashley about her school all she ever says is that the only days she has off are Saturday and Sunday (which is exactly why I picked that school!). Anyhow I can't tell if she is excited by this or dissappointed so I guess I'll find out soon enough.
Before I forget I want to thank Lynne and all of her colleagues at Burns, White, & Hickton for participating in a dress down day in honor of Ally. The money raised will go to Ally's recovery fund and of course will be a huge help to us while we are living in Pittsburgh. If I had the time I could spend the rest of my life writing thank you notes to all the people that have helped us over the past three and a half years and I still would not be able to complete the task. Thank you to everyone who has supported us in any way, we are forever grateful.
As usual it has been a busy couple of days. Shane arrived late last night and my brother and his family, Ashley, and my parents all arrived this afternoon. It is great to see Josh and Kelly and the kids. Ashley was exhausted today but I think tomorrow she will enjoy showing Katie and Luke around Pittsburgh.
Ally's last two days have been okay but not great. She has been up and down on her vent settings. Currently her vent settings are higher then what they were on Wednesday. She will have another scope done on Monday. The docs said there was no reason to do one today becaue they will be leaving her on the rejection regimen until Monday.
Today Ally was awake for a while and was very excited when watching Barney on the DVD. She was mouthing the words and pointing with her finger. It was nice to see her so happy.
I probably will not update until Sunday unless there is something to report.