She is awake! Ally's paralytic was turned off this afternoon and an hour later she was awake in full Ally fashion. Immediately her right hand went for the A-line in her left hand. Then we moved onto trying to sit up. Next it was asking for water over and over again. After an hour of watching her struggle and just get more agitated her nurse was begging for some extra sedation (ketamine seems to be the drug of choice today). After another half hour of fighting the sedation Ally tuckered herself out and she fell back to sleep.
Also today the docs weaned the vent a little more down to a peep of 6. Her oxygen was increased back to 60% but hopefully once we get her sedation under control the oxygen can be weaned back. Her feeds were increased to 30cc/hour and her stoma output has been down the last two days. The biopsies taken Monday looked good and the docs will continue to run her prograf level a little lower.
So that about sums up the day. I am off to bed to gear up for a busy day tomorrow. Now that Ally is awake there will be no rest for the weary (not that there was ever any rest anyhow). Don't get me wrong though I am more than happy to see Ally awake and to see all the fight that she has in her. Afterall it is that determination that has gotten us through the last four years. Of course I can't believe Ally will actually be 4yrs old in another week! Although the newly sprouted gray hairs on my head definitely prove that it has indeed been four years:(
Okay I know I updated this website yesterday but somehow it got deleted. So I am sorry if you read yesterdays update because some of todays update will be a repeat.
Ally has definitely been doing better the last few days. Her blood gases have been pretty good and the docs have been able to wean her vent a little each day. She is now down to a Peep of 9 (which was as high as 14) her peak pressures are 32 (last week they were 40) and her rate is down to 20 from 24. Also yesterday they were able to get her oxygen down below 60% for the first time in the last two weeks. Sorry if none of this makes sense but I know all the nurses that keep up to date with Ally's site will be happy to know exactly what is going on.
Ally is still being kept paralyzed. Yesterday the docs considered turing off her paralytic but thankfully reconsidered and decided to keep it on board until she makes it down to a peep of 8. I think this is a wise decision on their part. In theory Ally should require less sedation if she is not paralyzed. However Ally usually ends up requiring more sedation because she ten so fiesty. As of now we kind of have Ally's sedation under control. She is on a versed, precedex, and morphine drip. Plus she has chlorolhydrate and methadone scheduled around the clock.
Another scope and a biopsy were done yesterday and the scope looked good. I thought the biopsy was a rapid but it wasn't so we should have those results sometime today. I don't suspect it will show anything but like I said before it is better to be safe than sorry. Ally's stoma output has decreased some and is not as watery. Her feeds have been increased to 25cc/hour and she continues to receive some TPN to make up for the calories and nutrition that she is missing through enteral feeds.
Overall the last few days have been an improvement. Ally's lungs continue to look better on x-ray and I am hoping she has turned the corner. Time will tell.
The last two days have continued to be difficult days for Ally. Yesterday she had an episode in the morning where she dropped her oxygen sats and was unable to recover for quite some time. The docs ended up bagging her for about a half hour to try and keep her sats out of the 70's. After that some changes were made to the vent and at this point she is pretty much on as high of settings as the vent (and her lungs) can handle.
I was definitely thinking she would end up on the oscillator yesterday but, things seem to have calmed down a little. Today the docs were able to wean the vent the slightest bit which hopefully will by us the time we need to keep her off of the oscillator. (For those of you who don't know what an oscillator is it is another mechanical ventilator but it works a little differently and it is what the docs go to when they can no longer ventilate a patient on a conventional ventilator). Considering the settings that she is on her blood gases have been relatively okay.
The most frustrating part is that we really don't know why she seems to be acting sicker. Her chest x-rays have been unchanged this week but still look remarkably better than they did last week. Ally's white count was really elevated on Tuesday so blood cultures and trach cultures were ordered. The blood cultures were negative and the trach cultures grew some minimal bugs, all of which Ally has grown in the past and at this point would probably just be considered her normal bacterial flora. Due to the high white count two IV antibiotics were started and then after yesterdays episode two more were added along with an IV antifungal med. Thankfully today transplant and infectious disease took a closer look at Ally's meds and decided that this amount of IV antibiotics was a little bit extreme. Especially when you consider the fact that the only thing that we know we should be treating is the flu which of course is viral. They have scaled back the meds to just two IV antibiotics, one IV antifungal and have decided to keep her on the Tamiflu for now.
Today Ally also had yet another scope and biopsy done. Her output has still been high and although, I am beginning to think Dr. Kyle keeps ordering these biopsies so that he can just make me worry more, I am glad he airs on the side of caution. Her scope looked good and I am sure the biopsy will too. The only other problem today has been Ally's sedation. She continues to be kept paralyzed and she has an arsenal of sedation meds but unfortunately seems to be more awake today. Mostly we can tell this by her heartrate and the fact that her pupils have been very large. The nurses have been pushing for an additional narcotic drip and although I hate to see her start yet another drip I know she needs it be adequately sedated. (At this point she has a drip for Cisatricurium, Versed, and Precedex. Plus she also gets Chlorolhydrate every four hours, PRN Morphine almost every hour, and intermittent doses of Ketamine.) I am trying to just focus on what she needs now and not think about the nightmare it will be to get her off of all of these meds.
So like I said before I think it is just going to take Ally a long time to rebound from the flu. Yesterday Ally's doc told me to "POOF! make her better." If only it were that simple. Of course, I think I would have worked my magic a little sooner, probably like 5 months ago. Better yet I would have waved my magic wand over my belly while I was pregnant and fixed it right from the start. Which leads me to think, where would I be had Ally and all of these problems not come into my life. The fact is it doesn't matter because this is my life now. What is important is how I teach my girls (and maybe all you people reading this site) to take whatever life gives you and make the best out of everyday.
Well so much for the start of better days for Ally. Today Ally was a little too fiesty for her own good. She ended up battling the vent so much that she collapsed her left lung and was not able to keep up her oxygen sats. Needless to say she is now paralyzed again and is back on even higher vent settings than what she was on last week.
On the positive side her scope and biopsies from yesterday looked good. Her output is still up but we are guessing this is just from her being sick. Her feeds have been holding at 15cc/hour so the docs did restart her on some TPN for now. Also on the good side her liver numbers have all returned to normal leverls.
I think it is just going to take Ally a while to bounce back from the flu. The ICU docs have already said that they will probably need to wean her vent settings even slower so that she does not have another setback (did I mention how thankful I am that Ally still has her trach). Since we are familiar with the waiting game I guess it really does not matter how long it takes to get Ally better just as long as she gets better.
Please continue to keep Ally in your prayers and Ashley could also use some prayers too. Right now Ashley has a cold and I think she is probably a little run down from all the craziness in our lives. I also know that she is sad that Ally is back in the PICU and that she does not have her to play with.
Hopefully yesterday and today were the start of some better days for Ally. Yesterday the ICU docs decided to reduce Ally's vent settings and turn off her paralyzing meds. Of course this meant Ally was trying to sit up in her bed a half hour later and trying to rip out her newest attachments. The docs then spent the better part of the day trying to increase Ally's sedation so that she was not fighting against the vent.
Today Ally was awake for a little bit and most of that time she spent rather mad. First she wanted water, then she wanted her arterial line out, then she didn't want her pillow, then she did, then she wanted to sit up, no not up that high! Next it was the pulse ox probe, this toe, no that toe, then we moved onto socks and what color we wanted and let's not forget the blanket, on-off-on, no not that blanket!!! Needless to say I was praying Ally would just stay asleep. Didn't I just say last week that it is always nice to see the fight that Ally has in her, maybe I should not have said always:)
Not too much going on here. Ally has been about the same since the last update. Today her chest x-ray did finally look better but we have still not been able to wean her vent at all. Therefore since her settings have remained high the docs have continued to keep her paryalyzed and sedated. Her stoma output has leveled off a little and her feeds have been restarted.
So for now things continue to be a waiting game. We'll update when we have something new to report.
Kind of a status quo day for Ally, which is definitely fine with me. No changes to her vent settings and her oxygen is holding steady at 60%. She has required some extra doses of meds to help keep her sedated but overall I think she is comfortable. Infectious disease decided to stop all of her antibiotics and just treat her for the flu with Tamiflu. Her upper biopsies looked good but her lower biopsies showed some activity. This means Ally's steroids will be restarted and her prograf level will need to be run a little higher than what her docs would have liked it to be. This may make it a little more difficult to fight the flu but we also don't want to run the risk of her having severe rejection. Like I said it is all a balancing act.
I started to update this site last night but decided to stop since it felt like I had no good news to report. Today I still don't have too much good news but we at least have a diagnosis for what is going on with Ally. Yesterday Ally had a bronch and some samples were taken and sent for viral and bacterial testing. We just found out she has Influenza A. Of course it is not like I am ecstatic about this but it is at least nice to have something definitive to treat.
Right now Ally's lungs are in bad shape. She is on fairly high settings on the vent and is still on a ton of oxygen. She was also having problems maintaining her sats whenever she was awake and sitting up or talking. The ICU docs thought it would be best if she was paralyzed so that the vent could do all the work and that she was not able to fight against the vent. Having her paralyzed would also make it easier to place some additional central lines, an arterial line, and for her to have an endoscopy and ileoscopy.
The scope and biopsies that were done on Monday looked good. Today's scopes also looked good and we will have the biopsy results tomorrow. The transplant docs will need to keep Ally's immunosuppression as low as possible so that she is able to fight off the flu. However, lowering the immunosuppression puts Ally at a higher risk of rejection. The next few days or so will be a delicate balance of meds. She will also be put on Tamiflu which is one of the few meds to help fight the flu.
You would all be happy to know that Ally was awake for a little this morning prior to the increase in her sedation meds. She is just as fiesty as ever and she knew exactly what she wanted and did not want. At one point her nurse wanted to take off Ally's shirt to place a hospital gown on her. Ally had already received a few boluses of sedation plus was placed on a continuous infusion of a paralyzing med. Needless to say we were convinced she was out for good but, once we tried to take off her shirt Ally flicked open her eyes, grabbed her shirt and told us to GO!
Ally could really use all the prayers you can say for her. At this point Ally's lungs are really sick. Getting over the flu is a huge fight for someone as immunosuppressed as Ally but Lord knows she has enough fight in her.
Just a quick update to say that Ally's breathing is much worse today and that shortly she will be headed down to the ICU. Her chest x-ray looks significantly worse and the doctors will be treating her for pneumonia. She will also be getting a bronch to get some better secretion samples from her lungs. At this point her left lung is completely whited out on the film. She is on 100% oxygen and is barely keeping her sats above 90%. She will be placed back on the ventilator and hopefully the positive pressure from the vent will help to open up her lungs.
Please say a lot of prayers for Ally. I am also still not convinced that something is not going on in her belly given the fact that it is enormous. So if there is something going on it would be really nice to figure out what it is.
sWell the last few days have not been so great but I am hoping we are starting to see some improvement in Ally. She was at least out of bed today for the first time since Wednesday evening so that has to mean some sort of improvement. As far as finding out what is going on with her we are still at a loss. All cultures that have been done (which are too many to count) are negative. She is on a couple of IV antibiotics, and some antifungals, plus she is on some additional steroids. So even though we are not sure what is going on hopefully we have it covered.
I am trying to think of everything that has gone on in the last few days but there seems to be too much to remember. Ally's fevers are starting to diminish but she has still been needing a fair amount of oxygen. Her belly has been very distended but not tender. She has also had yet another increase in stoma output and is now having blood in her stool. Her liver functions have been elevated again and so the doctors have decided to treat her for rejection even though they really don't think she is having rejection.
Rejection means more steroids, which mean uncontrolled blood sugars, which means endless glucose sticks and insulin shots, which means lots of interrupted sleep for Ally. Ally's blood sugars have ranged from near 500 to 40. But the doctors have discontinued the hydrocortisone steroid and have put her on methyl-prednisone and thankfully this does not seem to affect her blood sugar level as much.
Today Ally had chest and belly x-rays and an chest and abdomen CT scan. All of which showed a lot of nothing and I am never sure if that is a good thing or bad thing. The fear of the unknown is driving me insane and sometimes it is just easier when you know what you are treating. Tomorrow Ally is supposed to have another ileoscopy so maybe that can help tell us something. There is also a new transplant doc on tomorrow so I am sure that will mean some change in treatment. I just love Mondays you never know what to expect when a different doc comes on and like I said earlier it is one of those things that could be good or bad!
Anyhow overall I would say Ally definitely seems better than where she was Thursday and Friday. Please pray that she can continue to improve and that we may find out what we are treating.
I can't even believe that I am writting this but once again Ally has fevers. They started early yesterday morning and have not really stopped since. I think she was only up for about two hours yesterday, shortly after one of her motrin doses had kicked in. She had a fairly restless night but did manage to get some sleep.
We are of course waiting on cultures. So far respiratory and urine are negative. We will have blood and stool results later this morning. In the meantime additional IV antibiotics have been started (she was still on some from the previous infection). Yesterday morning she was acting pretty septic so everyone was a little worried. Her heartrate has still remained high and her blood pressures are definitely low for her but still within a normal range. She is requiring some oxygen but no additional respiratory support.
Please keep Ally in your prayers (as I know most of you already do). Fevers and especially line infections (which is what we all are assuming this is) should be a thing of the past now that Ally has been transplanted. She desperately needs to start drinking more so that we could get rid of this line!
Well I am definitely starting the year off on a bad note with keeping this site updated. But you know the story, I am just too busy to write. On another bad note, Ally is still in the hospital. It seems it is just one thing after another with this hospitalization.
First off the decanulation is not going to happen right now. ENT has definitely decided to wait a few weeks until everything else has settled down. Second Ally got her new line and everything seems to be good with that. Of course she is still on IV antibiotics so we will see after she is done with those.
So what is keeping us here??? Ally's liver functions have been up for a few weeks now. She first had an ultrasound done about two weeks ago and then she had a liver biopsy, then an MRCP (special MRI that looks at the pancreas and bile ducts) and yesterday she was supposed to have an ERCP but there was a lack of communication (how does that always happen) and anesthesia was not aware of the procedure. So now she is supposed to have the ERCP done today! Needless to say Ally is all screwed up with her days and nights becuase in the last 10 days she has had genenral anesthesia four different times, today will make five!
The liver biopsy did not indicate any rejection but it does indicate that something is going on with her bile ducts. The MRCP showed that the bile ducts look okay but we have been told that the biopsy can actually be more conclusive. So the ERCP is a procedure that uses and endoscope to take a look at the bile duct. Then some contrast dye is used and if needed a stent is placed in the bile duct. This procedure will be done over at UPMC Presbyterian by one of the GI doctors. Then main risk is pancreatitis and there is a chance that Ally may need this done more than once.
I am hoping that once the ERCP is done we will be able to get out of here by the end of the week. Ally's stoma output had been very high at the end of last week and over the weekend but it seems to have calmed down. If that would increase that would be the only thing that I would see keeping us here at this point.
Otherwise Ally has been good. She is definitley getting a workout with all the walking she has been doing. Ashley started back to school yesterday and had gymnastics last night.
I will try to update sometime tomorrow to let everyone know about the ERCP. Please keep our friends the Dicesare family in your prayers. Tomorrow Anthony will have a very involved surgery at duPont. Please pray that the surgery goes well and for strength and patience for Sandra and Tony.
To start the New Year off right I thought I would write my own update. First off, Happy Birthday Daddy!!! Second, I want to thank everyone for all the prayers and support that you gave to me and my family this past year. We could not have made it without everyone's help.
Everyone keeps telling me 2008 will be a better year but I think 2007 was pretty great. I know some people would not think spending about nine total months in the hospital as a great year but you have to look at it from my point of view. I have been given a second chance (technically third) at life. My mommy and daddy had prayed for my transplant for so long and although it has been a very long recovery I am on my way to my new "healthy" life. So like I said I guess 2008 might be better but I have no complaints about 2007 afterall I made it through the year and what else could I have asked for.
Okay now I will update everyone on what is going on with me. I am still in the hospital. I got my line pulled and a PICC placed but since then I have been having some problems with my liver numbers being out of wack. Today I had a liver biopsy and we should have those results tomorrow. The docs don't really think it is rejection because more than likely the bowel would be showing signs of rejection. I guess they are thinking it is something with the bile ducts so later this week I may need to have a study done to check those out.
We have still been waiting for the final word from ENT of Pulmonlogy about getting my trach out. Neither seems to want to make the final decision so I think my mommy is a little fed up and is planning to track down my ENT doc via email. I am not supposed to get my new line till next week so if we could coordinate the decanulation in that time that would be great. Otherwise I may end up coming home with my PICC for a little.
So that is about it but before I go one last thing. Please pray for all of our friends who have lost someone in 2007 especially those that have lost a child. They are really the people who will need a better year and who need our prayers the most.