Blog
September 30, 2008
We had a really good trip to Minneapolis. Callie is a great traveler and actually slept most of the way there and back. The pulmonologist was happy with her progress. He said she looked better than he was expecting her to. He said her lungs sounded great. He did a thorough exam and didn’t see anything that caused him concern. One of the things I wanted him to do was look in her ears. She has been hitting her head more than normal but has shown no other signs that anything is hurting her. Before I even had a chance to ask him, he had looked and said she has a little fluid buildup but nothing major.
We got the go ahead to wean Callie to ½ liter as long as she can maintain her sats above 95%. I tend to err on the side of caution and have only weaned to ¾ of a liter but she has tolerated it really well. The doctor told us that her chubbiness is a result of the prednisone she has been on for a while now. I figured it was but now I know for sure. The doctor said steroids can do one great thing but they have many not-so-great things they do. We are now working on slowly weaning Callie off the prednisone. It will be a slow wean but he thinks it will be successful.
Callie will be seen again in one month and at that time, she will have her current g-tube replaced with a Mic-Key button. The concept is the same in that it allows her to be fed directly into her stomach. The setup just looks a bit different, though. I don’t know a lot about the button but it is something she will have until she no longer needs a feeding tube.
Callie weighs 12 pounds and 5.4 ounces. She is just shy of 23 inches long. I graphed her new numbers and it looks as if she is finally starting to follow the growth curve. She’s still way below the curve, of course, but at least her numbers are following the curve.
Callie worked with the speech therapist today on solid food and she wasn’t too interested. She did her best when she was watching her brother play and wasn’t thinking about what she was doing. Oh, I wish eating would come quickly. I can’t help but think Callie would really like the taste of something and become more interested in eating. Patience is hard.
It is hard to have an almost 11 month old baby who in many aspects is more like a 4 or 5 month baby. It seems like the newborn phase is lasting forever. It is hard trying to think about a one year birthday party – part of the fun is eating the cake. Not sure what Callie will do with that.
I love fall but I have been a little nervous about this one. We are now to the time where we reach the one year mark of all the crappy things that happened in the pregnancy. September 28, 2007 we found out about the Twin to Twin Transfusion. October 1, 2007 I spent the entire day lying in bed with a laptop, talking to doctors around the country about my options and researching the syndrome. I was hoarse by the end of the day but was exhilarated that from my bed I could fight for the lives of my girls and there were doctors who would listen to me. By the end of that night, Jason and I bought tickets to fly to Providence, Rhode Island to meet with two doctors who would see if I was a candidate for a surgery that had never before been performed on identical quadruplets.
So, right now, as well as staying in the present, I am reliving much of the past year. It is bittersweet and I have shed some tears the past few days. I can’t say that I am any closer to understanding why things went so terribly wrong, but I can say I have absolutely no regrets to any of the decisions we made in trying to save the girls.
One more thought, Wyatt now knows he has four sisters. One day we were just hanging out and talking in the kitchen and I just felt it was the perfect time to tell him. He was sweet and not traumatized by it. He is still having a hard time remembering the names “Annika” and “Daley” but when he does remember, he enjoys telling other people about them.
September 24, 2008
I’m back. For those for you who missed me, I just needed a break. It has been pretty busy on the home front but I have also been doing some “normal” things such as minor landscaping around my house and sewing Wyatt a cowboy pillowcase. But by the time these projects were finished, I was too tired to blog.
Since returning from our last hospitalization, we have been able to get home health established. It is wonderful. There is a difference of opinion between the insurance company and the nurses who are in our home over how much help we need/qualify for, but for now, I am thankful for any help I get. I am especially hopeful that having consistency of nurses who see Callie on a weekly basis will help in times when Callie is not doing so well. Before our last hospitalization, I was constantly taking Callie into the doctor’s office. I hope that now we will be able to manage Callie more at home and not have to expose her to germs from other kids in the doctor’s office as much.
Callie has done really well since coming home. I think she is more stable now than she has ever been. Her oxygen saturation has been great and her work of breathing has been less. Her heart rate has been great – nothing like it was a month ago.
Callie has regained much of the strength she lost while in the hospital. I don’t think she is quite as strong yet but she is getting there. She can still roll from tummy to back but hasn’t quite accomplished back to tummy. Her reaching skills have greatly improved, though she is still not the best at reaching straight up for toys. Callie’s daily routine includes some pretty intensive playtimes where we work on skills she just hasn’t yet mastered.
Speech therapy is working on introducing solid foods to Callie. We have pretty much just given up on the bottle and are working with textures in her mouth. Callie is not crazy about having food put in her mouth, but she doesn’t gag as soon as it hits her mouth (like she used to), which is incredible given all she has been through. Just like everything, it is going to take time to get her actually eating by mouth. We are still very thankful for the g-tube.
Speaking of g-tube, since the nurses have been in our home, they realized that all I do is feed Callie – every 2 hours and 15 minutes all day long every day. We made a huge (for Callie) jump and dropped two more feedings during the day, so she is being fed every three hours. Her tummy can’t quite yet hold all that food comfortably, so we are running the feeding for over an hour, but it is nice to not be warming milk up every couple of hours. Our goal is to weekly drop the amount of time it is given and eventually she will be fed every three hours over the course of 30 minutes.
Callie will be seeing her pulmonologist on Monday. I will hopefully be getting a weight and height then as well. I am not sure what the doctor will say. I know she is not ready to come off of oxygen but I don’t know if he will try to wean her flow or just leave it at one liter. I am fine just leaving it. It seems like any time we try to wean, something happens. Can you tell I am paranoid?
That is about all I can think to write. My days have been full taking care of Callie and Wyatt and working on Callie’s development. Thanks to some respite care and nursing, I have been able to spend a little more time with Wyatt and hopefully we can get into even more of routine where Wyatt and I can get out and do things together.
Callie hardly gets out. We did take a trip this past week to Detroit Lakes. Callie had to stay inside the condo all week but Wyatt enjoyed his vacation of fishing and playing in the sand. If you ask him his favorite part, he will tell you naptime. Not sure what that is about. But now we are home and are getting snuggled into our house in preparation for the lovely North Dakota winter months. But maybe for a few more weeks we can get out and enjoy some fall walks.
September 23, 2008
This is Jason again. Kelli asked me to post a quick update. She, Wyatt, and Callie are on a mini vacation with Papa and Granna. They're staying at a timeshare in Detroit Lakes (about 45 miles east of Fargo). It isn't a long-distance vacation at all, but it allows for some good time away while still remaining close enough to Callie's doctors should anything happen. I was able to be there over the weekend, but am at work during the week. They'll be home in a few more days. All that to say, Kelli doesn't have internet access while there, so she's not able to post anything new.
Callie seems to be doing pretty well. While she still has a long way to go, she's getting bigger (over 12 pounds now) and stronger each day. She's still not sitting up on her own, but her head control is pretty good. She's also doing more "typical" baby things now - reaching for things that interest her, for example. It continues to be a slow process, but progress is clearly being made.
September 16, 2008
This is Jason. I know it has been a few days since the last update, and since Kelli's been busy recently with her sister and brother-in-law in town, I thought I would take a moment to offer a quick update. My, how time flies.
The past several days have been really enjoyable. We spent a lot of time with visiting family members, did a few small projects around the house, and just had some good family time. I even got to go goose hunting over the weekend, which is always a good time.
Callie is doing pretty well. She does seem to be a little restless at times, and is occasionally hitting herself in the head like she did when she last had an ear infection. We'll have to watch that and see.
I suppose there is not a great deal of exciting news to update folks with, but as always, we see that as a good thing.
September 9, 2008
Callie’s appointment went well today. We learned the fun fact that she is now 11 pounds 5 ounces so she has put on some nice weight since being home. I just hope it is good weight and not excess fluid. I still haven’t found out how to tell the difference. But her lungs sound good to me and her work of breathing is less than I have ever seen it, so I can’t worry too much. She is also 21 ½ inches long. The cardiologist was very happy with how Callie’s echo looked. She still has hypertension, but the pressures are significantly less than before. The device is in the correct place and is working wonderfully. Because of Callie’s age and size, the cardiologist wants to keep a close watch on her, so we will be seeing him every couple of months for echocardiograms and follow-up.
Callie is doing well overall. I feel she is medically more stable than I have ever seen her. The biggest thing I have been dealing with lately is what I call her princess mentality. Since arriving home from the hospital she has been very demanding of our time. She only catnaps during the day, rather than taking a couple of long naps like she used to do, and she wants to watch movement. It doesn’t matter what kind of movement; she just wants people to move so she can watch them. When her brother is around, it is great, since he constantly moves. But set her by herself for a few minutes while I try to start a load of laundry downstairs or load the dishwasher in the kitchen, and she throws a bit of a fit. I am hoping at some time she will get back to the point where she can humor herself for awhile and even take a long nap once in a while. But for now, we will deal with it.
September 8, 2008
Not a lot to update on today. Callie has an appointment with a cardiologist here in Fargo tomorrow for a follow-up visit. She seems to be doing pretty well overall. She lost a lot of her strength when she was sedated for so long during her last hostpital stay, but she's slowly gaining back some of her head control and other things that she had "mastered" before she last got sick.
Kelli's sister and her husband are in town for a few days, so it will be nice to visit with them for a while this week.
It's a slow news day, but to us that's a very good thing.
September 5, 2008
Kelli’s taking a short break from blogging, so I’m taking over for tonight. Don’t worry, Kelli’s not done for good – she just needs a little break. She’ll continue to update. I promise. I’m just filling in for a day or two.
We are all doing well. Callie seems to be feeling good, Wyatt is over his cold, and Jason and Kelli are hanging in there. Yesterday evening, we participated in a 5k run/1 mile walk as a family. Kelli and her mom walked the mile with Callie in a stroller, and Jason ran the 5k while pushing Wyatt. A good time was had by all. The picture section has a couple of shots of Callie and me right before we left. And yes, that is a hat that looks like an apple.
Ever wonder how much Callie’s hospital bills were (are)? Based on some of the hint-at-the-question-without-actually-asking-it conversations I’ve had, I think it’s safe to say it’s crossed the mind of a person or two. Well, we got a letter a few weeks ago from Children’s Hospitals and Clinics of Minnesota that summarized her hospital charges (from the first time she was there – not the second). Here’s what we learned:
Blood Products $9,657.25
Cardiology $12,056
Laboratory $133,864
Medical Supplies $16,152
Operating Room $30,416
Occupational Therapy $7,023
Speech Therapy $300
Radiology $32,401
Respiratory Services $171,288
Professional Fees $5,017
Pharmacy $194,209.10
Room Charges $1,131,083
Other $138
Total $1,743,604.35
The letter also came with a disclaimer: “These charges reflect the hospital services only and do not include services from your personal physician or the physician component of pathology, radiology and anesthesiology services.” (Of course, Callie had additional charges in all of these areas, too.)
Keep in mind, we are not financially responsible for all of this – far from it, in fact. The vast majority is picked up by Blue Cross Blue Shield and/or North Dakota Medical Assistance. But it is a bit sobering to think about what all it took just to get Callie home from the hospital for the first time. And that doesn’t even take into account the other costs that aren’t listed – travel to and from < xml="true" ns="urn:schemas-microsoft-com:office:smarttags" prefix="st1" namespace="">
Please understand that we’re not sharing this in an effort to seek additional donations or anything of that nature. Yes, many people have been very generous to us financially, and for that we are truly thankful. It has been, and continues to be, a tremendous blessing. We’ll never be purchasing a private jet or dining on caviar, but we have enough to make ends meet. At the end of each month, we still have enough to pay the electric bill and put some groceries on the table.
On one level, this information about expenses is being shared to satisfy the curiosity of those who’ve wondered but never asked. More importantly, however, it is being shared as a testimony that God provides for his children. He has always done so, and always will, and I want people to know that. I know it is true because I have lived it.
He is faithful.
Amen.
September 1, 2008
We are home. Callie was discharged from the hospital Saturday afternoon. We are back at home, working on normalcy again.
Wyatt has been thrilled to have his sister back. Saturday night he could do nothing but tell us what she was doing and what sounds she was making and he is kissing her feet just about every chance he gets.
Callie has been rather moody/emotional since coming home. It is more stressful for me because it is so opposite of how she was in the hospital. She was happy and content and got to where she could put herself to sleep without her pacifier. It was great. Since coming home, she is pacifier dependent and napless. It is so confusing. She is tired and needs naps but I don’t know what she thinks she will miss by sleeping. We have had a difficult time getting her to fall asleep at night but once there, she at least sleeps throughout the night.
I am hoping one day (very soon) I wake up and Callie is happier and is sleeping better. She has recently come off some medication, which could cause her to be irritable, so that is what I hope it is.
So, other than trying to figure Callie out, we are doing well. It has been nice having Jason around for the long weekend. I suppose tomorrow will be a true test – my first day with Callie and Wyatt. The last time we had our first day together, Callie was admitted to the hospital so I really haven’t had one yet.
Thanks for continuing to check on us and pray for us.
August 28, 2008
The little girl continues to do well. She had kind of a rough time this afternoon - mainly because she was being too charming to sleep. She had numerous visitors and she really felt she should smile at them all but finally all she could was cry big crocodile tears. It took a lot of coaxing to get her to sleep - but that was only after she got fired up with her immunizations. I have a feeling she might be a little cranky tonight unless she can get some good sleep in.
I am back at the RMH trying to clean. If all goes according to schedule, we should be back home by Labor Day. I am very excited. I had a good talk with the rounding doctor today and she is very pleased with where Callie is. She also let me know that Callie recovering so quickly is pretty amazing (thanks for the prayers). If she would have been rounding the night Callie was admitted, she would have told us that Callie would be on the vent anywhere from 3-5 weeks. As it was, it was only a week. The doctor reminded me that this will probably not be our only scare with Callie - that it is just the way it is with kids similar to Callie. She was understanding and reminded me (again) that I can't protect Callie from everything.
August 26, 2008
We had a good Tuesday in the hospital. I really don't have much to report - I haven't been able to touch base with the rounding doctor in two days now. My goal for tomorrow is to get to the hospital early and not leave the room until he comes. I really don't have any pressing questions - mainly how he thinks Callie is doing and when he thinks we might be able to go home.
Callie is continuing to be a happy, content girl. I am really hoping if it will continue when we get home. She has practically given up her pacifier and can play contentedly in her crib until she falls asleep on her own. It is great!
I can tell we have fallen behind developmentally. She could roll from tummy to back and almost roll from back to tummy before she got sick and now she is not interested in either of these. I haven't been pushing her too hard but I am trying to get her moving again and working her muscles. I will be glad when we can get home and start therapy again. Since she no longer needs the pacifier I don't know where we are with sucking and oral aversions. She hasn't bottled in over two weeks now so it will be interesting to see what happens when we try to start again.
Wyatt had a good day. His nebs are helping and he hasn't been working as hard to breathe. We still don't know what is going on with him - he won't see the doctor again until the end of the week but right now his is back to his three year old self. (Actually, he might be a tad on the hyper side due to the steroids he's on).
Oh, yes, I just remembered I was supposed to share more of the info I learned yesterday. Here it goes.
1. Everyone is still thrilled Callie's ASD is closed. Her heart rate is lower as is her respiratory rate.
2. Callie will be on a small dose of baby aspirin for the next 6 months to help prevents clots from forming around the device in her heart.
3. The cardiologist said we will not need to be seen by her anymore - other than for the occasional echo for the pulmonologist. So now that Callie's ASD is closed we should not have any other heart issues!
4. Callie is on multiple diuretics because with the ASD, her lungs were being flooded with fluid. Now that the hole is closed, they are trying to clear out that excess fluid and get her lungs in the best shape for going home. Their goal is to get her off all but one of the diuretics before she goes home.
5. Callie is slowly gaining back some weight. I am frustrated that she is the same size she was over a month ago but there is not much I can do about it.
That is all I can think of. The excitement is slowing down here but that is a good thing.
August not-so-sure-what-the-date-is, 2008
Callie is out of the PICU. We are now in our new home on third floor. It is officially labeled the Pediatric Intermediate Care Unit but is known as the IMC. Callie is in a nice large room, and so far she seems to like it. We had a rather uneventful day, just getting used to our new environment.
I was able get a little more insight into Callie's need for all the diuretics, and I will explain that later. Her feedings are going better today, so that's good news.
It was a full day both here and in Fargo. I got a call from my mom tonight at 7:45PM that they were on their way with Wyatt to the doctor. For some reason he has been having trouble breathing - quite a bit of coughing and wheezing. Both my children are now on nebs and steroids for their lungs. Wyatt is pretty pumped about getting nebulizer treatments now like his sister.
So now it is late and I am tired and a little sad I couldn't be there with Wyatt, so I am going to bed.
But all is well and I really will try to write more in depth tomorrow.
August 24, 2008
Callie was a sweet girl today, and she seemed to be in a good mood. In typical Callie fashion, however, she's started some new things that we don't understand.
For some reason today, she decided she no longer wanted to digest her food. She was doing great with feedings, but today her digestion just slowed way down - so much so that her feedings were stopped altogether. She also had a couple of bad blood gases, so she was placed on additional diuretics. Neither of these things are good, because she's not gaining weight. She's still below ten pounds, even though she was well past that mark when we were all at home together. For a while she was gaining an ounce a day, but now she seems to have hit some more obstacles.
Tomorrow I will spend a lot of my day quizzing the doctor about Callie's new developments/obstacles. It's just a bit frustrating that she seemed to be getting better, but now these new things have come along.
August 22, 2008
Jason was a little more calm than me when he wrote last night's blog. If I would have done it, it would have started out with something like this:
"CALLIE'S ASD WAS SUCCESSFULLY CLOSED TODAY IN THE CATH LAB!!!!!"
I am thrilled with the results we had yesterday. Though I don't know all the implications of having the hole closed, when 50% of your blood is flowing through a hole in your heart to be oxygenated a second time, you have to think that closing it can only mean good things.
Things I know from the procedure:
1. Callie's hypertension is sensitive to oxygen - meaning the pressures are lower when she is on 100% oxygen.
2. Callie's ASD was 9mm in size. The 9mm device was too large for her heart so a 6mm implant was placed. This is not something they like to do because there was great risk it would slip loose after being implanted. But, the only alternative was open heart surgery so the doctor tried it and he was very happy with the outcome. The tissues in Callie's heart will now grow and cover the device and it should be the end of our ASD issues.
3. Callie is still going to need oxygen and will still have pulmonary hypertension but it should improve with this device in place.
4. A pulmonologist told me today that repairing the ASD was Callie's best bet for not having to have a tracheotomy. Though it is still possible, it is less likely now.
5. Callie had a good day. She was extubated early this morning because she woke up and was tired of the breathing tube. She has been breathing well on her own and we are in the process of weaning her off the high flow nasal cannula. She will hopefully start eating tonight and hopefully she will be well enough to come home some time next week. She is still weak and needs to get back to her baseline but with time that should come. Oh, she did have a blood transfusion today so that should perk her up a bit.
August 21, 2008
Callie is doing well. Her heart cath was done about 3:45 this afternoon. Immediately afterward, she had surgery to correct the ASD (atrial septal defect - the hole in her heart). She is now sleeping soundly. She is still on the ventilator from surgery, but should be off again in the next day or so.
We will write more details tomorrow (we're tired and it's been a long day), but if you want to know more before then, you can do an internet search for "septal occluder" to see what she now has in her heart.
Thank you again for your prayers and your support.
August 20, 2008
We had a good day today. The little girl was more like my old Callie I know. She played, talked, smiled and was into everyone's business. I was able to talk with the doctor today and share my thoughts and concerns. Multiple doctors are following Callie and they are all in agreement with chances that have been made so that was helpful to know. We haven't seen the improvement we would have liked with Callie being on he high flow cannula and I was concerned that she might could go backwards. He didn't think that was the case so Callie was left on the high flow today. Sometime tonight or tomorrow Callie will be intubated for the heart cath. The procedure is scheduled for 3:30 PM so hopefully they will be able to start right around that time (or even earlier). Jason is coming tonight and will be here for the procedure. It is possible the heart cath can take three hours and they will have the results immediately so it will probably be a late day for us.
Please pray for safe travel for Jason. He will either be heading back to Fargo late tomorrow night or extremely early Friday morning. This weekend the halls open so Jason is incredibly busy.
Please pray for Callie to rest well tonight and for her to have a peaceful night and a good day tomorrow. The doctors feel confident she is in a good place for this procedure so I just have to trust them.
Pray for the doctors that will be performing the procedure. It is a relatively minor procedure but we are dealing with the heart.
Pray that we will get answers that we need to help us care for Callie. Also pray that if the ASD is causing significant issues, it will be able to be closed tomorrow in the cath lab.
August 19, 2008
Today has been a little more stressful than I would have liked. The little friend has had a couple of pretty crummy gasses - with carbon dioxide levels in the 70's. (A couple of days ago they were in the high 40s.) She is now on the high flow nasal cannula, though we haven't seen much improvement with that. Her work of breathing is not increased and she has not had trouble oxygenating, but her x-ray this morning did look a little worse and I have been told her lungs are a little more wet, so I don't know what is going on.
I did visit the NICU tonight and was able to talk with a doctor who cared for Callie many times. She gave me a little insight about what might be going on - that it might be more related to all the diuretics Callie is receiving more than any pulmonary issues. So I now have to formulate some questions to ask tomorrow when the doctor rounds, and hopefully tomorrow I will have a clearer picture about Callie's condition.
I think I am most uptight because I was told we want her in the best possible position before doing the heart cath. And it feels like we might not be heading in that direction which makes me wonder if we will have to postpone the heart cath, which means I will be here longer than I was hoping.
Oh, it basically boils down to the fact that Callie likes to keep life exciting. Although, this is not my definition excitement. I would probably say my little friend likes to keep life stressful.
Callie has lost quite a bit of weight since all this happened. She is now 9 pounds 12 ounces - she has lost almost a pound. I am not thrilled about that. I don't know how to distinguish between water weight that she needed to lose and baby weight (that we worked so hard on).
For some more randomness, I tried reading Treasure Island by Robert Louis Stevenson. I spent the entire day trying. I do not have the brain cells nor the energy to understand a book written in the 1800's. Such a shame. I used to enjoy delving into the literary world. I gave it up for something written by Dr. Suess. I finished that book - and even understood it. Such a great accomplishment.
August 18, 2007
It has been a week since Callie was Life Flighted (or flown via a Life Flight plane) to Minneapolis. (Jason and I have had numerous discussions over whether or not "flighted" is a real word). Anyway, Callie is much better than she was this time last week. She has handled her first 24 hours off the ventilator wonderfully. She was at 2 liters for a while but this afternoon she was turned down to 1 liter and has maintained oxygen saturations greater than 95%. Her carbon dioxide levels have been creeping up, so I am not sure how the doctors will deal with that. Or you can pray the levels will come down to the 40's or 50's and it won't be an issue anymore.
Callie had another echo yesterday and it showed that while her hypertension is less than what is was, it is still high. I had a lengthy discussion with an intensivist today and he feels like Callie going into the cath lab on Thursday is a good idea. Assuming the results are as anticipated, she will hopefully have her ASD (hole in her heart) repaired at that time and that will take out one factor in her pulmonary hypertension. She will still have hypertension because of her preemie lungs and chronic lung disease but hopefully it won't be as severe. There are risks involved and they are dealing with the heart so it is a pretty major procedure for me to think about. Thankfully. we are in a place where they do heart caths on a daily basis.
Now for the fun stuff. Callie had a really great day. She was Miss Chatty Cathy. Her voice is pretty much a whisper from being intubated but that didn't slow her down. She told stories the entire day - to anyone who would listen - doctors, nurses, RT's, the crying baby next door, me, etc. She really had a lot to say. It was great! She also got a bath and really enjoyed sitting in the tub. I think she would have spent the whole day in the warm water if we would have let her. I brought clothes and a blanket from home and I think Callie loved it. She really doesn't have a favorite blanket or toy but today she held onto the blanket for dear life. She slept with both arms wrapped around the blanket with part of it up by her nose. It was neat to see she recognized the smell and I really think it comforted her. She was a very peaceful baby all day. I was there about 7 hours today and she didn't cry once - even when two nurses held her down to change her IV dressing. She was happy and content and it was so wonderful to see. Callie's feedings of milk were also started back today so she might just be really happy to be getting some milk again.
We will spend a couple more days resting up in either the PICU or a step down unit. Please pray for Callie to continue to heal so she will be in the best possible shape for the procedure on Thursday.
August 17, 2008
Callie is breathing on her own! This afternoon, around 3 PM, she was extubated and she has been breathing well ever since. The weaning process was started last night and continued today but true to Callie form, she was extubated sooner than they were planning.
She had been on a constant drip of medication to keep her sedated while on the ventilator. (In general, she’s not very happy to have a breathing tube stuffed down her throat). Since they were planning to take her off the vent tonight or tomorrow, her constant drip had been removed and her medication had been changed to an “as needed” basis. If she woke up and needed to be sedated, she could be given the medication a dose at a time.
Around 1:30 today the rounding doctor came in to check on Callie. He originally thought she wasn't going to get off the ventilator until Monday. The nurse told him that was not what she thought and said that we either needed to move forward with extubation or start sedating her more, because she was being quite active. He asked how much sedation medication had been given to her, and the nurse responded that she was "maxed out." With that Callie looked straight at the doctor and smiled. The nurse thought that was pretty funny. Callie was as high as she could go on her sedation medicine but was wide awake and playful. So, they decided to move forward and Callie was extubated without any drama.
Callie is currently on a flow of one liter and has been doing really well. She is also receiving lots of steroids so I am not sure how her oxygen needs will change as she comes off of these. With the steriods and lack of heavy sedation, Callie has been pretty restless all afternoon. They started her on some new meds to help with any withdrawals she might have from the morphine so hopefully this will help her relax. Please pray that Callie will sleep really soundly tonight and continue to do well on the nasal cannula. We want her to be feeling good for her heart cath on Thursday.
We had a great time with Callie today. It was our first day in a while to see her smile - both with the tube in and with it out. She still isn't 100% but she is doing much better than last week. Hopefully the next few days will be laid back and Callie will continue to heal.
August 16, 2008
It was a busy day at the hospital. Callie's medicines and the ventilator were weaned further. Callie tolerated the weaning of the medicine beautifully. I was thinking she might have an addiction to the meds but she had no issues coming off. She is now completely off morphine and one other drug. She is still getting the paralytic but it has been weaned significantly as well. The nurses are going to rely on "bumps" of medicine to keep Callie comfortable and fairly still until her extubation. Callie did wake up while we were at dinner tonight (so we missed it). The nurse said she was appropriate (i.e appropriately ticked off). She is not a fan of the tube and she was letting the nurse know. She quickly received a bump of medicine and went back to sleep. Overnight is going to be a dance of keeping Callie sedated but hopefully letting her breathe some on her own. They have to see that Callie is up for breathing on her own before they completely take her off the vent. Callie is going to be calling the shots of how the weaning will go. Her last gas a few minutes ago wasn't the best so they need to make a few adjustments to help her blow off some carbon dioxide. But other than that, she is sleeping soundly. Hopefully she is getting energized for when she will be breathing on her own. We are anticipating that she will be extubated some time tomorrow. We would love prayers that it will go well, and that the nurses will be tuned into what Callie needs to keep her comfortable during the process. It is exciting/nervewracking thinking about her coming off the vent. I have to think she will do well since this is the most stable I have ever seen her while on the vent. Thanks for your continued prayers.
August 15, 2008
We have a plan. Callie is currently being weaned on her vent settings and her sedation. She is completely off nitric oxide and has so far handled that really well. For the next 24-48 hours, the vent and meds will continued to be weaned and hopefully sometime Sunday Callie will be extubated. We will then give her a few days of resting and Thursday afternoon she will have her heart cath done. There is a possibility she will need a breathing tube again for that procedure but the doctors want to make sure she is completely over the virus she had so that is why they are waiting until later in the week for the heart cath.
Callie had a pretty low-key day. She had some good asleep periods where she was resting on her own. We only had one scare while she was being repositioned. Her breathing tube moved a little and her oxygen saturation quickly dropped. The last I saw it was 4%. But unlike the other times early on when she was so unstable and all of her sats would drop, her heart went into high gear to pump out blood to the various parts of her body. Just like the NICU, I was incredibly impressed with the quick response time of everyone involved and it only a matter of seconds to get her situated. I won't say it wasn't scary but I didn't cry this time.
I am continually impressed and thankful for the care Callie is receiving from doctors and intensivists and nurses and everyone involved. The down side is that I am living away from home again but the up side is I know this is where Callie needs to be.
August 14, 2008
Callie had another good day. In fact, she was so good the nurse pretended we were on vacation in Hawaii today. Callie was switched to a continuous drip of pain medication last night and that really seems to be helping her. The continuous drip keeps her from having times of heavy sedation and then times of light sedation. It is pretty much just a nice constant throughout the day. We can still tell from her heartrate when she is asleep, awake and really mad at us.
The doctors started weaning the nitric oxide this morning and by tomorrow morning she should be off it completely. They are watching her closely to make sure she tolerates the wean and her hypertension doesn't get significantly worse.
Callie's oxygen was also weaned successfully from 60% to 40%. She weaned quickly and has been very stable at 40%.
The doctors today found out that Callie has a virus that started this process. It is a respiratory virus that for the average human isn't so bad but for Callie, it put us back here in Minneapolis. We are hoping she is now at the tail end of it and very much on her way to getting better.
Our new prayer request is for the heart cath procedure. We were told that it would hopefully be end of this week or beginning of next. Jason and I were optimistically thinking Monday or Tuesday. We were placed on the schedule today for 3:15 PM Thursday. The original plan was to keep Callie on the ventilator until the procedure was done. However, one more full week of high dosages of pain and paralytic medicine is not what I want for Callie. So now we are faced with possibly trying to get her off the vent with a possibility of having to ventilate her again for the procedure or with trying to make a good enough case to get the procedure done earlier in the week. Tomorrow I should have the chance to talk with some doctors who can hopefully make changes to the schedule to get Callie in sooner. This is what I prefer to happen. If it is not possible we will just have to work with it. Please pray that the timing of the heart cath will be what is best for Callie.
August 13, 2008
Callie had a stable day. Her oxygen saturation was great all day and she had some really good blood gasses. I talked with a cardiologist and the plan is to have the heart cath procedure done sometime early next week. He is optomistic that Callie's ASD could be closed at this time if need be. Callie needs to remain vented until this procedure can be done. It doesn't make sense to extubate to then only reintubate a few days later. That is where our biggest issue for the time being comes in. Throughout her NICU stay and now, Callie has seen a lot of medicine and has built a tolerance to much it. She is receiving various drugs many times a day. I am not talking about your basic Tylenol and Ibuprofen. Morphine is one of the drugs she receives as often as every hour. Morphine given every hour = dependence. When we get to the point she can be extubated, Callie is going to have be weaned from these drugs she has become tolerant to. Thankfully, this is not new for the hospital but it is new for me. I guess my prayer request is that the doctors can find a combination of drugs that work for Callie and maybe don't have to be given as often. And then when the time to wean comes, that Callie will wean easily and not have any major issues. Callie's light sedation throughout the day was a perk for me - when she awoke from time to time, I once again got glimpses that my little girl is still a little spitfire. I walked in the room this morning and as soon as I started talking she woke up and started moving. She wakes up enough to try to kick her blanket off (she hates her feet being covered). She woke up tonight, watched me walk across the room and then decided she really wanted to go back to sleep. I want her to be comfortable but it is a blessing to see Callie is not oblivious to everything around her.
Tomorrow will probably be more of the same - waiting for Callie to heal so she can go into the cath lab as healthy as she can be.
August 12, 2008
Considering the circumstances, Callie had a good day. She has been stable since arriving in Minneapolis. Her oxygen has been successfully weaned so that she only needs 60%, and her vent settings have been turned down some (both good things). She is heavily sedated at all times but we have seen bits of her personality peak through. After lunch, we came back to the room and as soon as I started talking she started responding. She moved her arms, opened her eyes and probably would have loved to have been able to sit up and play. Her time awake was shortlived because she quickly realizes there is a tube down her throat and she tries to cough it up. Thankfully, the sedation works very quickly so she is uncomfortable for only a very short period of time. It is nice for me to see my little fighter and my favorite little girl with big blue eyes.
Callie had an echo today that is much improved from her last one. So the current plan is working. We are going to give her a few more days of healing and hopefully by the end of the week or beginning of next week, she will be scheduled for a heart cath. This is a process where they can measure the pressures in her heart and lungs and try her different combinations of room air, oxygen, and nitric oxide to see how she responds. Ideally, it will give us a clearer picture of what Callie needs and how to treat her.
So for now Callie rests. She has been visited by doctors and nurses and RT's that we met while in the NICU and we are so thankful for their encouraging words.
August 11, 2008 (9:50 PM)
Callie and I made it safely on a fixed wing flight to Minneapolis and Jason made it safely by car. He actually arrived before us and was at the hospital waiting, because we were delayed in leaving due to weather. Callie tolerated the travel relatively well. Before we left Fargo it was decided that it would be safest for Callie to be intubated before leaving. They felt she was too unstable to fly safely with CPAP and if she got into trouble mid-air it would be a mess. So, she was intubated in Fargo and the Cities doctors were glad that decision was made. Although she was (and still is) sedated she wasn't a fan of the ventilator for traveling. The RT actually hand bagged her the entire way but Callie responded well to it. There were only a few times when her sats dropped. It took a while to get her on good vent settings here in Minneapolis but once they were established, she has done well. Callie is highly sedated and will remain so for the time being. Her body is pretty much resting and all the machines are working for her. She is on the ventilator and she is also receiving nitric oxide which helps with the pulmonary hypertension. Various labs and x-rays have been done and she will probably be having an echo of her heart tomorrow. Due to her limited IV access, two central lines were placed once we arrived in the Cities. Callie has a very bad track record with central lines so I was quizzing the nurse tonight about risk of infection (which I was told is relatively low). Callie's numbers are the best we have seen them in a while. Her heartrate is low and when it goes up they give her more sedation to help her relax. Her blood pressure is lower than it was in Fargo and her saturation has been 96-97%. I asked the nurse what category she would put Callie in, "critical" or "stable," and she said Callie was sort of "critical-stable." Callie is a very sick little girl and we have long way to go but for now she is holding her own. Callie's recent illness seems to have exacerbated her heart and lung issues so now we are going to start the process of sorting out how to treat Callie and address each issue.
Jason and I are doing okay. I am having to force myself to stay in the present and try not to grieve not having the same happy, smiley girl that I had last week - the girl who loved sitting in her Bumbo seat and shaking anything her little hand could hold. I am also trying not to get too uptight about the weeks to come. The last thing I wanted was to be living in the Cities aways from Wyatt and Jason again but I will do what needs to be done. We had just celebrated Wyatt's last day of daycare but it seems we might not yet be done with daycare. So for now I am trying to stay focused and understand as much as I can about what is going on and what we need to do for Callie. She is a fighter and I am going to keep reminding her of that everyday.
Thank you for your prayers and letters of encouragement.
August 11, 2008
Callie will be flying to Minneapolis at roughly 1 PM. From my point of view, she is stable but is not getting any better and has a chance to decline rather rapidly. She is known so well in Minneapolis and that is where her specialists are that is makes sense to send her there before her condition worsens. This is a very stressful/uncertain time and it is hard to be at peace.
Jason and I will both be traveling to the cities - possibly together if it is fixed wing or Jason driving and me flying if it is helicopter. We have explained to Waytt what is happening and he seems okay. He just wanted to know who was going to pick him up from daycare. I love his simple life. And wouldn't mind right about now....
Please continue to pray for Callie, us and guidance of her doctors.
August 10, 2008
Callie had a…day. It wasn’t particularly good and it wasn’t particularly bad. It wasn’t as good as yesterday (up until last night). It did start out rough this morning at 2AM when her saturations dropped into the 70’s and it took quite a few hours to bring that up and get her settled. But for the rest of the day she had no major issues. She handled suctioning relatively well and recovered well once she was agitated. The RT’s are suctioning significant amounts of “yuck” (for lack of better terms) out of her nose and back of the throat. I am surprised she is breathing as well as she is with all they get out. We are still working on perfecting the suctioning without irritating too much. The doctor feels Callie is moving in the right direction. I think it just might be a slower road than we would like. Yesterday she looked and acted much better and today she still just seemed sick. For now we are going to continue on the same path, keeping in mind that if she starts to go backward we might have to consider intubation to help her breathe and get over this illness.
I am having a difficult time seeing her struggle and am having a difficult time wanting to spend all day at the hospital. I feel so helpless and I know if I wear myself out trying to be at the hospital all the time, when she does come home, I am going not be in the best shape to care for her. And I am afraid I am getting a cold from the boys so I am less than thrilled about that. Jason relieved me tonight and I spent some great time with my favorite three year old boy. We made cookies from scratch and ate them with milk and hot tea (Wyatt thought he was super special for drinking hot tea). Then we played chase and hide and go seek. For some fleeting moments I was able to put the stress aside and laugh and really have fun. It was therapeutic, though it didn’t last long enough.
I really don’t have any more specific prayer requests. It is feasible Callie will be in the hospital for at least a week so we just have a lot of planning to do in order to spend time with Callie and time with Wyatt – who probably needs us most right now. We are just waiting on Callie to tell us what she needs to heal and to go with that. Hopefully we are one the right track and her days will start getting easier and better.
August 9, 2008
Callie had a pretty good day up until around 6PM. This morning when we arrived, she was bright eyed and looked significantly better. Her eyes didn’t look sick and she wasn’t coughing and hacking. I had a great afternoon playing with her – she smiled and interacted with some toys. She took a great nap in the late afternoon and she satted 98% at 1 ½ liters. Then, around six, she started coughing and wheezing and her work of breathing increased. We tried nebs and suctioning and still had a difficult time getting her settled. Now, at 10, she is breathing easier but is overly tired and restless and still not satting very well. The doctor has ordered meds to help her sleep, which I am very grateful for. I am hoping as soon as she is able to calm down and rest her saturation will go back up and she will have a good night.
Her chest x-ray today still did not look good, but Callie looked much better. The doctor said from his morning visit to his afternoon visit he was pleased with her progress. Yesterday, the doctors were very concerned about her. She will still be in the hospital for quite few days but she seems to be improving.
The doctor rounding this week thinks her chest x-ray shows signs of both pneumonia and heart failure (meaning excess fluid on the lungs). I am hoping to be able to talk with the cardiologist in Minneapolis this week and find out what she thinks and what are plans are for Callie’s care.
Today was better than yesterday but we still have a ways to go. I know Callie is where she needs to be right now and due to her difficulty tonight, I know she needs to be there a while longer. Oh, her IV infiltrated after less than 24 hours so we are trying to give all meds orally (through the g-tube). If she has issues with tolerating her feedings, we will have to try IV’s again. She is very difficult to stick and the lines don’t last very long. So we will pray her feedings go well and she tolerates the oral meds.
August 9, 2008
Callie was moved to the PICU yesterday evening, not because her condition had worsened but as a precaution that they could keep a closer eye on her there. Her arterial blood gas came back with a carbon dioxide level of 56. This is wonderful. It means Callie is ventilating well and blowing off the carbon dioxide. The doctors are unsure of what the chest x-ray means. It possibly shows pneumonia or the radiologist was inclined to think that due to where the changes are, it shows heart failure. I freaked out a bit when they told me this. Then they explained right now it just means the lungs are retaining more fluid and since all of Callie’s vitals are good, it is not critical. Callie’s feeds were stopped last night and she was started with IV fluids and antibiotics. The doctor last night was great. He told us that we know Callie better than he does so he wanted me to explain everything that was different with her. I like being an active part in her care because these doctors don’t know her as well and she is an opinionated little girl.
My mom stayed with Callie last night and I slept for 12 hours. It was incredible. I am getting ready to head back to the hospital (5 blocks is a lot better than 4 hours). Thank you for your prayers and for the incredible e-mails of encouragement we have received.
August 8, 2008
We have had a rough week. Well, not all of it has been rough, but the points I remember have been rough. Monday was pretty good; we went to the Cities that night for Callie’s doctor appointments the next day. Early Tuesday morning, Callie started coughing. I didn’t know if she was coming down with something or of the hotel room was a bit too cool or exactly what was going on. Tuesday the pulmonologist listened to her lungs and they sounded really good – no crackles. She did sound a little “snotty,” but it was all in her nose – nothing in her lungs. Wednesday, Callie started coughing and gagging more. That’s when I felt sure she was coming down with something. Her oxygen flow had to go back up by half a liter (to 1.5), but her saturation was good. Thursday we had a trip to the pediatrician’s office – a check-up visit that had been scheduled well in advance of her latest challenges. Callie was pretty congested for that visit and after an exam we found out that she had an ear infection. This would explain for the past couple of weeks why she has been hitting herself in the head – on the left side. It hurt and she was trying to tell us. I have no previous experience with ear infections (as Wyatt had none), so I was clueless. Anyway, we learned that in addition to some general congestion, she had an ear infection as well. When it was all said and done, Callie went home on quite a few new medicines.
During the night last night we had to increase her oxygen due to her inability to catch her breath with her coughing episodes. Last night was by far her worse night in a long time. I haven’t slept much the past three days because Callie has been a bit fussy during the night, and last night Callie only slept in 5 minute intervals. Then she would wake up miserable and cough and choke and gag, but she could never get anything up. So, this morning I called the pediatrician. We discussed that even though right now I had a decent handle on Callie’s care, it was possibly getting to a point where I couldn’t give her what she needs. For example, I’m able to suction her nose with a bulb syringe, but she probably needed more, deeper suctioning than I would be capable of doing. So today we took Callie to the hospital here in Fargo. She is currently admitted and they are running a series of tests to see what is going on.
I did just get a call from the doctor that Callie’s chest x-ray looks worse compared to her last two and based on the location in the lungs in which it looks worse, it is possibly a sign of heart failure. I was told right now that it is not critical because Callie’s vital signs are stable. But the doctor here is contacting the specialists in the Cities and we will go from there. Callie has been resting a little more comfortably since arriving at the hospital. They have done some deep suctioning, and removed a lot of mucus and other “stuff,” which has helped.
I am currently at home trying to rest and keep it all together. I am exhausted in about every way possible- physically, mentally, emotionally, spiritually. I have gotten maybe three hours of sleep per night for the past three nights. My mind is tired of the constant calculating for meds, food, and care of Callie. Doctor visits require lots of question asking and answering and that is tiring. My body is hurting from not resting. It is emotionally taxing to 1. have hormones and 2. have the day-to-day constant questions - is Callie sick? Is Callie well? How sick is she? Do we wait, do we take her in? Is she sick enough that it might lead to greater things that her little body can’t handle? I know none of us is guaranteed life, but it is hard when day to day you wonder how long your child will live and if the issue facing her will at some point be insurmountable. Spiritually I am tired. Part of that is my fault. I stink at having quiet times because I usually fall asleep. I am tired of pleading with God to heal my daughter and keep her well. I don’t know how to pray anymore. Do you pray that she just gets better or do you pray that the hole in her heart is large enough and causing enough issues that it needs to be repaired sooner than later even though that means a major surgery because just maybe it is the hole that is causing most of the major issues? I don’t know. I don’t know how to get life under control. I don’t know how to enjoy life and laugh and have fun when life seems so serious right now. I don’t know how to balance my time with Wyatt and Callie.
Today was Wyatt’s first day home with Mommy. I am not here for him. I am in the hospital with Callie. Thankfully, he went to lunch with friends and stayed with his Papa but I was so looking forward to my first day with him. I was going to take him to lunch and make memories with him, but that will have to be another day.
I am not trying to gripe or complain but I am sharing my heart. Life is hard right now. I want it to be easier. I want some carefree times. I want to know how to enjoy myself. I want and need prayers. So does Callie and the rest of my family. That is why I am sharing everything with y’all. The circumstances are so far out of my control that all I can continue to do is cry out – with or without words.
One more note. We are waiting to hear from the cardiologist to schedule a heart cath for Callie. It seems the pulmonary hypertension is bad enough to warrant having an invasive procedure to measure the pressures caused by the ASD. This probably makes no sense, and I realize that. But it is all I know. I will know more when the appointment is made. I will share more then.
I am going to take a shower. And rest.
August 5, 2008
We just returned from a whirlwind trip to the Cities. Jason and I are both tired and Callie was exhausted. She had the luxury of going to bed early, though, because she doesn’t have to draw up medications or mix up feedings for tonight and tomorrow, or even clean the kitchen for that matter.
Our cardiologist was out of the office today but Callie did have another echocardiogram. The preliminary results show the pulmonary hypertension has not worsened from the last visit. But it also has not gotten better so I am not sure where that leaves us. We are expecting a call from the cardiologist in the next couple of days to discuss our next steps.
We did have a wonderful visit with the pulmonologist today. I had a lot to catch him up on since the little friend has been throwing us some curveballs for the past two or three weeks. He was pleased with how she looked today and he thought her lungs sounded clear. I was a little concerned about what he would find today because very early this morning Callie was coughing a bit. I was quite concerned that she was getting sick again. But the doctor didn’t see anything of immediate concern, so that was encouraging. I had a list of questions about experiences the past month, and Callie’s overall health with the ASD, and hypertension in general, and he took time to thoroughly explain everything to me. He gave us better insight about when we need to take Callie to the hospital (like we did last week) vs. when we can care for her at home. He listened to every fear and concern I have. I feel more confident in caring for Callie after meeting with him, but I am sure she still has the ability to scare me greatly and stress me out when it comes to keeping her healthy.
I guess where we stand now is Callie’s oxygen baseline is up to one liter from the ½ she originally came home on. We will wait a few more days to see what the plan is for Callie’s heart and lungs. We will update more when we know more. The little friend did impress the staff with her growth. She is now 22 inches long and 10 pounds 7 ounces, sans diaper. I got lots of comments about her having cheeks now. When Callie came on May 30, she weighed 6 pounds 5 ounces and was only 20 inches long. She’s growing!
Click here for July 2008 blog entries.