So Many New Nurses

Lynnea was in a pretty good mood most of the day. Overnight her SATs dipped several times, but didn't stay down long enough for the overnight nurse to feel that oxygen was warranted. During the day today she kept them up in the range we like to see them. Since we qualified for a second week of 24/7 care, we again have lots of new nurses in and out of our house, which has been frustrating. Lynnea is not comfortable being left with strangers, and I don't feel comfortable leaving her with nurses I don't know, so again I had to stay at home with her all day, rather than going to church with Ashlyn (Ashlyn was still able to go, thanks to Auntie Megan being willing to pick her up from our house to bring her). Tomorrow is another day filled with new nurses, as are most days this week, so I guess I won't be leaving the house any time soon.

Ups and Downs

This morning Lynnea was crabby and hard to console. She had her blood drawn, which she hated, of course. This afternoon she required some oxygen again, but only for an hour or so before she was able to keep her SATs up again with out it. After a short nap, she was in a better mood. This evening after bath time, she was very playful and happy until bedtime.

Full of Smiles

We had another good day at home today. This morning we went for a walk and hit a few garage sales. The girls seemed to enjoy this. I think they both get bored when we stay home all the time, but it is hard to bring Lynnea out because she gets so tired so quickly. This evening Lynnea helped comb her own hair after bathtime, and then she had lots of fun playing peek-a-boo with Ashlyn. Both girls were very giggly. It was fun to see.

Lynnea had a bit of a fever overnight last night, but her temp stayed down during the day. She kept her SATs up all day without any extra oxygen as well. We started a new medication for her this morning (a new diuretic; hopefully we can get rid of some of the other ones she's on), so beginning tomorrow morning, for the next few days, she will need to have her blood drawn to check her electrolyte levels to make sure they remain stable. I know she will hate this, but we still opted to do this at home rather than stay at the hospital while her medication is being adjusted. We also have 24/7 nursing in place for another week, which is chaotic due to our homecare agency not being very good at getting the hours covered in any organized sort of way.

Family Time

Today was a good day. Lynnea managed to keep her SATs up all day without any extra oxygen, and she didn't have a fever today. She and Ashlyn were both in pretty good moods most of the day. This morning we went for a walk around the neighborhood, and this afternoon the girls enjoyed playing downstairs in the playroom together. Lynnea was in a silly mood this afternoon and enjoyed putting her toys in her mouth and then looking at me so that I would tell her what a silly girl she is. This evening both girls insisted on sitting on my lap reading stories.

Cardiology Appointment

Today Ashlyn enjoyed painting (she feels that a day isn't really complete unless she gets to "do art"), and Lynnea had fun playing with her toys on the floor in the living room. Lynnea didn't require much oxygen during the day, though last night she required oxygen all night long, and even with some oxygen support dropped her SATs several times throughout the night.

This afternoon we took Lynnea to her follow-up cardiology appointment at the U of M with Dr. Kochilas. Even though the things that he told us were nothing we didn't really already know, some things never get any easier to hear. He pointed out that all of Lynnea's problems (her insufficient left ventricle, her pulmonary vein atresia, and her compressed mainstem bronchus) all add up to things being pretty much as bad as things can get -- lots of major problems, no real solutions. He told us that there are really three options that should be considered. 1.) Trying to repair the anatomy she has, but not doing it here -- he recommended that we let the surgeons in Boston evaluate her case to see if they have anything at all that they can offer her. 2.) Evaluate her for a heart transplant. 3.) Do nothing.

First of all, he wasn't really recommending that we take the third option, but he had to throw it out there. He would rather try something, even if it's a long shot, than not do anything at all. We agreed to sign a release of information form so that he can talk to the people in Boston about options they might have for her. He warned us that there is a good chance that they won't be able to offer us anything without doing some more diagnostic testing on her, and it would most likely be necessary for us to go to Boston for the testing, and then possibly stay there for any surgical treatment that they might be able to offer. He said that anything that they would offer would undoubtedly be high risk, but then, pretty much anything that she has done at this point is considered high risk. There is also the simple fact that Boston is far away, which makes this option expensive, and inconvenient, but we told him we are willing to consider it anyway.

If it turns out that there is nothing that they can offer us in Boston, we will be evaluating Lynnea for a heart transplant. Kochilas is not recommending a heart/lung transplant because the success rate for pediatric heart/lung transplants is not very good at all, especially on someone as young as Lynnea (we would also have to travel out of state for a heart/lung transplant because they don't do them here). A heart transplant for Lynnea would be complicated because her aortic arch is still in pretty bad shape, and complicated further by the fact that she only has one good lung. She is also at a high risk of rejection due to the number of blood transfusions she has had in her lifetime, and the antibodies that she has most likely built up as a result. She is also a hard match because of her age and blood type, so getting a donor heart could take a while.

Regardless of what ends up being done for Lynnea, Kochilas felt strongly that something needs to be done sooner, rather than later because she is not in good shape, and can't continue like this indefinitely. The only reason that he did not admit her back into the hospital today is because he feels that it is very important to have as much time at home together as a family as possible. If she gets any worse, we will need to take her back to the hospital. So, we are going to enjoy our time together as long as we can.

Requiring Oxygen

Lynnea had an OK day today. She didn't have any high fevers today, which was good. This afternoon she dropped her SATs again (not quite as low as yesterday) and required oxygen from 3pm on. She went to bed still on just a little bit of oxygen, and we might keep her on it overnight, just to be safe. This is our first night without an overnight nurse. Tomorrow we will go back to the U of M for a cardiology follow-up visit with Lynnea's cardiologist.

Ashlyn has moved into her own bedroom in the basement. She has spent the past three nights in her new room, and so far it has been going well. This way, she gets a good night's sleep even when Lynnea is up crying most of the night (which she's done a lot of lately due to the narcotic withdrawal).

A Little Unstable

This morning both Lynnea and Ashlyn went to see our pediatrician. Ashlyn completely enjoyed this (she likes going to the doctor, as long as no one pokes her with a sharp stick). Lynnea did not enjoy it. She spent nearly the entire time crying. This took a lot out of her, and when we got home, she dropped her SATs (and looked very blue), had a very high heart rate, and just looked very bad. Our nurse put her on some oxygen, and when her SATs didn't really improve even on four liters of oxygen, we called the U of M so that the cardiologists could decide if they wanted her to come in or not. Her cardiologist decided that it would be best if we could wait in out at home, unless she got any worse. She slowly improved and by bedtime we were able to take her off the oxygen again. Hopefully tomorrow will be a better day.

Lots of Withdrawal

Lynnea had a rough night last night -- she spent most of the night up crying and whining. This morning she spiked a high fever again (103.7) so we had to call the hospital to let them know. They gave us the choice of bringing her in or handling things at home, so we voted for staying home. They allowed us to increase her Ativan again (since the wean from that seems to be going a little too fast and causing her withdrawal symptoms), which improved her mood (and temp, and other symptoms) greatly. So, the Ativan wean will take a little longer than we had hoped, but hopefully she will tolerate it better if we go extra slow.

Coughing and Sneezing

It's official, both Ashlyn and Lynnea have colds. Ashlyn was moody all day, and ran a low grade fever briefly this morning, and Lynnea continues to cough and sneeze a lot, and has had a little harder time breathing today. Extra snuggle time for Ashlyn helped her quite a bit, and some extra nebulizer treatments for Lynnea helped. I also feel like I am catching their cold, which is not a whole lot of fun.

Happy Birthday Corey!

This morning Lynnea and Ashlyn enjoyed going for a walk around the neighborhood, and then Ashlyn and I spent some quality time together going shopping for a birthday present for Corey. She enjoyed shopping for Daddy's birthday, and was a very good girl in the store. Lynnea stayed home with our nurse during that time and took a nice nap.

Corey enjoyed being able to have his whole family at home with him for his birthday, so it was a good day.

Both girls seem to be coughing and sneezing a bit, so we'll keep an eye on things.

Playing Outside

Today was a good day. Lynnea was still a bit grumpy at times, but better today than yesterday. We went outside to play twice today, which both girls loved. Lynnea really enjoys her swing, and she liked it when Ashlyn blew bubbles for her. Ashlyn just loves being outside, no matter what she's doing out there.

Sorting Socks

While we are all trying to get back into the swing of things at home, there are some special challenges that come from being away from home for so long. Today I was trying to catch up on some of the laundry, and realized as I was sorting socks that I needed to start three piles of little girl socks rather than just two -- one for Ashlyn, one for Lynnea, and one for socks that don't fit either one of them any more; unfortunately, there were far more socks in the "don't fit anyone" pile than anywhere else. I found a similar problem when I was looking through Lynnea's dresser for something for her to wear today -- none of the clothes that she was wearing three months ago before we went into the hospital fit her any more. So, on my very long list of things to do sometime very soon is to go through and find clothes that fit both girls and take the too small stuff out of their dressers. Well, at least I won't get bored any time soon.

Lynnea had an OK day overall. She was running a fever again (which has become kind of her norm, so we don't get overly concerned about it), and was showing some signs of withdrawal, mostly grumpiness off and on throughout the day. I took her and Ashlyn outside to play in the backyard for a little while this afternoon and Lynnea really enjoyed swinging in her swing. It was nice to have that time with both of the girls.

Lots of New Nurses

Today was filled with lots of new nurses coming into the house to meet Lynnea and train in so that they will be able to cover the hours that we need covered this during this first week home. It is very tiring to have that many strangers parade through the house. Lynnea handled it pretty well though. Ashlyn also came home this afternoon, and it was very nice to get to tuck her into bed tonight -- I really missed doing that while I was at the hospital with Lynnea!

Finally Home

After 98 days in the hospital, Lynnea is finally at home with us again. She was discharged this afternoon. We will have 24/7 nursing care (if our homecare agency can staff it...this is a bit of a problem with them) for the first week at home, and then we will have the 80 hrs/week that we had before this hospital stay.

Overall, Lynnea had a good day. Her SATs are still a little lower than we would like, but better than they have been the past couple of days. Before leaving the hospital we had her GJ-tube taken out and switched back to just a G-tube, and we had her PICC line removed. She seems happy to be home.

Still Hoping to Go Home Tomorrow

Last night, due to the resident doctor not knowing Lynnea at all, and refusing to listen to everyone who does know Lynnea well, Lynnea was put on high flow oxygen support overnight. She was promptly taken off again this morning when the cardiology team heard about this, and she has been off from all oxygen support all day. Her SATs continue to run low (she's been pretty consistently in the low 60's...we like her in the high 70's), and she has been dipping again in her sleep some today, but it still sounds like there is a good chance we will go home tomorrow afternoon (mostly because there is nothing that they are actively doing to keep her SATs up).

Today Lynnea came up to the cafeteria to eat dinner with me, Grandma, Grandpa, and Ashlyn. She enjoyed laying in the wagon while we ate -- she played with a plate and a spoon nearly the whole time.

Playing Outside

Today the weather was finally nice enough to take Lynnea outside. She enjoyed this. There are a couple of swings outside of the hospital, and Ashlyn wanted to swing, so we let her. When Lynnea saw Ashlyn swinging, she pointed emphatically at the swing as her way of demanding to also get a turn, so we also let her swing. It was really cool to see her out and about doing "normal" kid things for the first time in a very, very long time. The time outside was a lot of fun for both girls, but completely tired Lynnea out.

Today was a day of more medication rearranging, and they are close to having us on a manageable medication schedule to go home. The plan is to discharge us on Monday afternoon. Lynnea is still off from oxygen, though her SATs have been pretty low all day, and during her nap this afternoon, she dipped much lower than she normally does when she sleeps (normally when she sleeps, her SATs are actually noticeably higher than when she is awake, which is a little unusual, but that's how she has always been). For now, nothing is being done about this, though they may decide to do a chest x-ray in the morning just to make sure everything still looks OK. The only "treatment" would probably be to put her back on oxygen, which shouldn't change their plan to discharge us on Monday since we can go home with her on oxygen if necessary.

More Withdrawal

Lynnea had a rough morning again -- she spiked another fever and showed symptoms of withdrawal again, especially irritability.  This afternoon went better though; her mood improved, and she was happy and playful, which is always nice to see.  Last night we tried changing her feeds a little bit as a step towards switching her to bolus feeds, but she didn't tolerate it (lots of gagging overnight), so we went back to the continuous schedule that she had been on.  We'll try again at some point, but we will probably wait until we are completely done taking her off from the narcotics she's on, and we'll go super slow with our changes.  Her medication schedules are continuing to be adjusted so that it is manageable when we are at home.  Some final labs were drawn this evening and her PICC line will be removed sometime before we go home.  We are also planning on having her GJ-tube taken out and replaced with just the G-tube like she came into the hospital with because that is much more convenient than the GJ-tube.  She did not require any extra oxygen support today, though her SATs were on the lower end of things.

We Moved to 5A!

After spending 93 days in the PICU, Lynnea was finally able to move to the general floor, and the rumor is that we are still hopefully going home early next week (we're still aiming for Monday, but we know better than to get our hearts set on a specific day).  She seems happy in her new room.  She was in a good mood all day, which was nice.  We are working on getting her medications on a schedule that will be manageable at home (I refuse to give diuretics in the middle of the night), and we're working on switching her feeds to bolus feeds instead of continuous.  Lynnea needed oxygen again this morning, but this afternoon we were off of it again, and we're still hoping that she won't really need in when we go home (we always have it on hand, but we don't want her on continuous oxygen at home).  This evening she willingly tried to take a bit of a cookie; we took the piece of cookie out of her mouth after she bit it off because we didn't want her to choke on it, but I was really impressed that she was willing to even try to take a bite, and she managed to do it without gagging.  This is very exciting. 

Probably Moving to the Floor Tomorrow

Lynnea had a wonderful day today.  She was in a happy, silly mood most of the day -- lots of smiles and giggles.  During her nap this afternoon, her nasal cannula came out of her nose while she was sleeping, and since her SATs were OK without the extra oxygen support, we kind of "forgot" to put it back on when she woke up, so she has been on room air since then, and she continues to do OK.  She is also off from all of her IV drips, which means we should be able to move to the floor tomorrow, unless something unexpected happens overnight.  Lynnea continues to tolerate her G-tube feeds just fine -- she is no longer receiving anything through her J-tube, which is great!  Now we'll work on transitioning her from continuous feeds to bolus feeds like she was on before this hospital stay.  We have also been working with the speech therapists here at the hospital to help Lynnea overcome some of her oral aversion and learn to eat with her mouth.  In the past, she has gagged at the sight of a spoon, so I am very excited that she has been willing to take some of her thickened water off from a baby spoon very willingly the past couple of days.  The other day she also dipped her finger in some frosting on a cookie that I was eating and she managed to put it in her mouth and not gag on it (in the past, any food in her mouth has made her gag), so this is impressive progress. 

This afternoon she got to go on another wagon ride.  We were once again disappointed that the weather outside was too cold and rainy to bring her out.  Instead of going outside, we brought her down to the second floor, and let her play the piano that is in the lobby.  She thought that was fun.  Fortunately there weren't many people around because Lynnea could use a few more lessons before she plays for an audience, but it was still very cute to see her reaction when she pushed the keys and they made noise.

Still Moving Forward

Lynnea had a better day today than yesterday.  She didn't spike any high fevers today, and she was in a better mood overall.  Because of her withdrawal symptoms yesterday, she is now getting some oral doses of Dilaudid, and Ativan as they continue to try to wean her off from her IV narcotic drip, so we will most likely be going home on these oral doses and we will wean her off from them slowly at home.  She continues to do well with her G-tube feeds, and they are continuing to slowly increase them.  It looks like she should be completely off from her J-tube feeds before we go home, and we will work on transitioning her from continuous G-tube feedings to bolus G-tube feedings at home.  She continues to need some oxygen support today, but I'm still hoping that once she gets over this cold she seems to have caught we will be able to get rid of her nasal cannula.  She spent much of the day playing and napping on her floor mat, and she went for a wagon ride this afternoon.

Break Even Day

Today was a "break even" day for Lynnea -- she has spent the same number of days during her lifetime in the hospital as at home. Today was kind of a rough day for Lynnea again. She had many withdrawal symptoms today, most notably being her extreme irritability, especially this morning. She also spiked a high fever again today -- 103.4, so she was miserable. When her fever is that high, her heart rate also gets very high, and her respiratory rate is high. The good news is that she only has one narcotic IV drip to get rid of before she can move to the floor. They expect her to be off from that within the next 48 hours, which means we could move to the floor on Thursday, and maybe home by next Monday is what the doctors are hoping for right now. Most of the day Lynnea managed to get by without any oxygen support at all, but this evening her blood-oxygen saturation levels dropped again, so she's back on a nasal cannula to give her a little bit of oxygen support, which is a little disappointing. She continues to sneeze a lot today, and she's coughing some, so we'll see how things go from here. The doctors also increased the amount of feeding that they are giving her through her G-tube, and she continues to tolerate that just fine.

Happy Mother's Day

This is the second year in a row that we have spent Mother's Day in the hospital. I am glad that I got to spend some time with both of my girls today; they are both so special.

Lynnea had an OK day. No wagon rides today because the nurses were all too busy. She spent some time on her play mat, and some time watching movies in her crib. She is now completely off from one of her narcotics (Dilaudid), which only leaves two more to get rid of. She is almost off from her oxygen support (she's on 1/2 liter), so hopefully she'll be completely off before we go home. We also decided to try to re-start her G-tube feedings today, instead of only using her J-tube. She's currently getting continuous feedings through both tubes, mostly through the J, but a little through the G, and so far she's tolerating it. It would be great if we could get her back to bolus G-tube feedings eventually, but this will take some time (if she seems to be tolerating things OK, this is probably something we could continue working towards at home). The bad news for the day is that Lynnea looks like she might be getting sick, probably catching a cold. This doesn't surprise me at all considering that she is teething, and I think she has gotten sick nearly every time that she has been teething in the past. I'm hoping that her cold-like symptoms (sneezing, extra tired, a little extra work breathing) won't keep us here for many extra days, but we'll see.

Lots of Wagon Rides

Today Lynnea enjoyed going on three wagon rides! She visited other floors of the hospital, and enjoyed saying hi to the few people that we saw (the hospital isn't very busy on the weekends, so there weren't as many people to smile at). She also enjoyed playing on the floor on her play mat again, and even took a nap there this afternoon.

The exciting news for today was the discussion in morning rounds about hopefully moving Lynnea out of the ICU on Monday or Tuesday (Tuesday is probably more realistic than Monday), and possibly even getting her home by the end of the week! After being here for three months (today it has been exactly three months that she has spent in the pediatric ICU) this was amazing news, and we are very excited about it!

Eventful Day

Lynnea had a busy day today! She went on a wagon ride this morning, and another one this afternoon. During the second wagon ride, we even ventured off from the fifth floor for a while. We went downstairs to the second floor to see the fish tanks in the Gold Waiting Room, and she seemed to think they were pretty cool. There were also lots of people to look at on the second floor; Lynnea loves to go people watching! It doesn't hurt that most people stop and tell her how cute she is.

This afternoon she also had some time with the Speech Therapist, who gave us the go ahead to try some thickened apple juice out of a sippy cup. Lynnea enjoyed this very much, and did pretty well drinking off the cup.

We also got her a play mat so that she can play on the floor in her room now. She loved that. She even managed to sit up unassisted for several minutes a few separate times. It was a lot of work for her to sit up on her own, but she was highly motivated to do it because we let her dunk her sponge in her water to drink as many times as she wanted to all by herself while she was sitting up. She was very excited about that.

Cute Hair!

Lynnea had a good day today. She started off a little crabby, but her mood improved throughout the day. She went for two wagon rides today, and loved them both. She was even able to leave the unit during one of them. We didn't go very far, but she enjoyed taking a trip around the fifth floor hallways between the units, just for a change of scenery. Ashlyn really enjoyed getting to go along to take Lynnea for one of her wagon rides.

At Dr. St. Louis' request, I put her hair in pigtails today. This was no easy feat, but she looked pretty cute, so I guess it was worth it. Everyone was impressed with her cute hair style during afternoon rounds.

Medically speaking, it was a pretty uneventful day. They continued to wean a little bit more on her narcotics. She has continued to spike fevers the past two days, though other than making her a bit crabby, she hasn't had any other problems associated with the fevers, other than a high heart rate. They continue to run blood cultures when she spikes, but nothing ever comes back positive, so for now they are not going to do anything other than give her Tylenol and ibuprofen to bring her temp back down.

Wagon Ride

The excitement for today was getting to go for a wagon ride around the PICU. Lynnea really seemed to enjoy it. Unfortunately the weather did not cooperate with the plan to take her outside, so we had to settle for our inside wagon ride. Maybe once the weather warms up again we can actually go outside.

Not much else going on today; they weaned one of her narcotics a tiny bit, but that was the only change for today.

Morning Coffee

Yesterday Lynnea had another grumpy day, but today was better. Her nurse this morning asked her if she would like some of her coffee, so Lynnea more than willingly took her coffee cup from her -- we didn't let her drink any, but it was pretty funny to see her play with the cup.

All of Lynnea's diuretics have now been transitioned from IV doses to oral doses, which is a step in the right direction. None of her sedation medications were weaned today due to the withdrawal symptoms she was experiencing yesterday. Her high flow oxygen was weaned down to 4 liters today, which is very exciting because it means that she might be able to take a wagon ride outside in the next day or so if the weather permits (this was Dr. St. Louis' request this morning during rounds -- that she go outside to get some sunlight and fresh air because she's been cooped up here in the hospital for so long).

Making Progress

Lynnea has been in a pretty good mood the last couple of days. She was taken off from her IV Milrinone drip yesterday, and seems to be doing OK without it (she is on oral doses of Losartan, Digoxin, and Aldactone instead of the Milrinone now). Her sedation wean continues to go fine, and if she continues to do well with it, she could be off from her narcotics by the end of the week (which would mean that we could move out of the PICU to the general floor then). They also weaned her high flow oxygen down to 5 liters today, so she's making progress on that front too.