Friday, April 30, 2010

18 Months Old

Lynnea is now 18 months old! She had a better day today. She was not quite as crabby as yesterday, and her fever was not as high today. She spent much of the day telling people to leave the room (nurses, doctors, etc.) by pointing at the door and waving bye-bye whenever anyone walked into the room. This afternoon though, she was fairly pleasant with the speech therapist, and seemed to enjoy playing with the physical therapist. Today her feeds were increased again, and she's finally tolerating her tube feedings well enough to turn off her IV nutrition (TPN and lipids). She's still not quite up to the amount that they want her on for a daily total, but she's getting pretty close. She is still on continuous J-tube feedings, which, ultimately I still hope can be switched back to G-tube feedings eventually, but we'll give her some time before rushing into that. Her IV Milrinone drip was turned down to about half of what it had been running at, and the plan is to turn it off tomorrow to see how she does without it. Overall, things seem to be moving in the right direction.

Thursday, April 29, 2010

Withdrawal and Fever

Lynnea had a tougher day than most lately. She was clearly showing signs of withdrawal from her narcotics today (most notably extreme irritability), and then she spiked another high fever (102.5), which made her even grumpier. Her oxygen flow was turned down to six liters, and she has done OK with that.

Wednesday, April 28, 2010

Moving Slow

The slow sedation wean continues to go fine, and slowly increasing feeds also seems to be going fine. Lynnea was still in a good mood today, and had a pretty uneventful day. The echocardiogram results from yesterday's echo showed that her heart function still isn't very good, but there has been some improvement since the echo that was done prior to her last heart cath. They are working on transitioning her over to some oral medications for heart failure (similar to the regimen she was on before coming into the hospital) in hopes of being able to get her off from the IV milrinone that she is still on. They may also start trying to wean her off from the high-flow oxygen that she is on because she seems to be doing a little bit better from a respiratory standpoint, and may not need as much flow as she is currently getting (7 liters, 35% oxygen), but there is no huge rush to wean that because, worst case, it would be possible for us to go home with high-flow oxygen if she really still needs it, so this isn't something that will keep us in the hospital for any extra time.

Tuesday, April 27, 2010

Still Running Fevers

Lynnea's day was OK today. She had a fever most of the day, and it was a little higher than yesterday. For the most part though, even with her fever, she was in a pretty good mood, and she continues to do OK breathing on her own, at least for the time being. She has pretty much everyone in the hospital now trained that when she signs "more" she means "more water" and she manages to convince pretty much anyone who walks into the room to dunk her sponge in her water for her. It's very cute and pretty funny. She had an echocardiogram done this afternoon, but I haven't heard the results yet to know what kind of shape her heart function is really in these days. There was nothing else new with her today -- they continue to wean sedation and slowly increase her feeds.

Monday, April 26, 2010

Fun with Lynnea

Yesterday Lynnea had a great day -- still full of smiles and giggles. Today was pretty good too, though she did have a fever, which made her a little grumpy at times. This evening she is in a playful mood again. She saw the Speech Therapist today because she seems to be aspirating the water that she insists on drinking off from a sponge. For now we are going to thicken her water to a nectar consistency so that it is easier for her to swallow. She didn't seem to mind this. We also offered her some baby food, which she completely refused, just like before surgery. Today the began working on weaning her sedation medications again, which still seems to be going OK. Tomorrow she will probably have another echocardiogram done before trying to transition her off from the IV Milrinone that she is on for her heart function right now.

Saturday, April 24, 2010

Happy Girl

Lynnea had a great day. She was full of smiles and giggles all day. She was very playful and interactive, she was even blowing kisses to Dr. St. Louis when he stopped by to see her this morning (which he seemed pretty pleased about). Her temperature was down again, and she looked like she was having an easier time breathing today than she has over the past few days. Nothing has changed as far as oxygen support or sedation, nothing was weaned today because the doctors still feel that it is in her best interest to just let her rest and not push her too hard. She had fun with the occupational therapist today -- she loved coloring and trying to dunk her sponge in a bottle of water. She also had some physical therapy today, which she didn't enjoy as much, but it still went pretty well.

Friday, April 23, 2010

Grumpy with a Fever

Lynnea spiked another fever today, but she still manages to stay off the ventilator. With the fever spike came a long day of grumpy baby, but this evening she has been in a great mood. I even had her giggling a bit, which was amazing to hear and see. She is on the same amount of oxygen and flow as yesterday, and nothing else has really changed.

Thursday, April 22, 2010

More Snuggles

Lynnea and I spent several hours today snuggling, which was very nice. Last night she had a pretty rough time breathing on her own, and I was actually a bit surprised this morning that they had not gone ahead and put her back on the ventilator. She still looked like she was really struggling this morning, but she improved after I held her in the rocking chair all morning. Snuggling makes her happy (which means she's calm and therefore has an easier time breathing), plus sitting semi-upright helps her clear her lungs, which also helps her breathe better. So, for now she is still off the ventilator, and doing OK. Her oxygen support has increased a bit though -- now she's on 8 liters of flow, and 30% oxygen. We'll take things one day at a time and hope that she improves rather than getting worse. For now they are still holding off on weaning her sedatives in order to give her the best possible chance to continue to breathe on her own.

Wednesday, April 21, 2010

A Very Good Day

Lynnea was extubated this morning at 10:45, and has been doing well every since. She is on some high flow oxygen (6 liters) to help keep her airways open, but mostly just for flow -- she has required very little actual extra oxygen all day (most of the day it was room air, but this evening she's needing between 25-30%). She is clearly working harder to breathe, but again, some of that is to be expected after being on the ventilator for so long. So, the plan is to watch her and see how she does. Ever since they pulled the breathing tube out, she has been demanding water off from a toothette, which is very cute -- she suddenly remembered how to sign "more" and hasn't stopped asking for water all day, except when she's napping or very distracted by other things. I was also surprised that she has a little bit of her voice back already; I had expected that to take a few days. She cries, and she makes pleasant noises when she is happy. I think she was starting to try to say a few words as well -- I think I heard "Hi" "Mom" and "LaLa" when she was watching Elmo's World. These might have just been random sounds, but I'd like to think that she was trying to talk. The best part of the day was snuggle time. It was wonderful to finally get to hold her again after waiting for so long. We snuggled for about three hours; she napped in my lap most of that time. She didn't have any fevers today, which was also very good news.

Tuesday, April 20, 2010

A Bit Discouraged

Lynnea had a rough day today. She spiked a fever again -- 103.6. She had a fever all day, and along with the fever came other issues like a really high heart rate, high respiratory rate, and high sat's (which for her is a bad thing). Her PEEP was weaned to 5, and she did some pressure support trial time today, though not nearly as long as the doctors had hoped (they turned her ventilator rate back on when her fever went way up). But, even with all of this, the plan is still to attempt to extubate her tomorrow.

Monday, April 19, 2010

Spring Party

Today Ashlyn enjoyed making a t-shirt at the Spring Party in the family lounge at the hospital. Last year she made an awesome hat, so we decided that she should make an awesome t-shirt this year. It's a big t-shirt, so she'll just wear it as pajamas for now. She seemed to really enjoy getting to make it, and she also enjoyed decorating her own cupcake as well.

Lynnea also had a good day today. Her PEEP was weaned to 6, and she spent 5 hours today on a "pressure support trial" which means that the rate on the ventilator was completely turned off, leaving Lynnea with the responsibility of initiating all of her own breaths rather than having the ventilator provide some of them for her. She did really well with this. Tomorrow they will turn her PEEP down to 5, and hopefully we will attempt to extubate her on Wednesday. She was in a good mood all day today, and seems to be tolerating the weaning of her sedation just fine so far. She also appears to be tolerating the increase in her feeds (she's up to 18 mL/hr) better than she has in the past several weeks, which is encouraging.

Sunday, April 18, 2010

Megan's Wedding

Yesterday I left the hospital for pretty much the whole day so that I could be in my sister Megan's wedding. I had fun and I enjoyed being able to support Megan in this way. Ashlyn was also one of the flower girls, so it was fun to get to see her all dressed up.

Lynnea did fine while I was gone. She asked for Mommy a few times, but the nurse was able to redirect her and keep her happy. Nothing was weaned yesterday, mostly because the doctors knew that I was going to be gone all day and they knew that I would worry less if they didn't make any big changes while I was gone. I appreciated that. Today Lynnea did well overall, though she did spike a temp again this afternoon, so cultures were sent as usual. Her ventilator has been weaned to a PEEP of 7, and she's doing OK with that. Her sedation was also weaned a little bit again today. The plan as of this morning is to attempt to extubate her when she demonstrates that she can handle breathing with a ventilator setting at a PEEP of 5, so probably later this week.

Friday, April 16, 2010

Slow Progress

Lynnea continues to do fine with both the sedation wean and the ventilator wean. She is down to a PEEP of 9 on the ventilator. The doctors also decided this morning that, once again we will try to increase her feeds, but we will do it very, very slowly, so now she is on 12 mL/hour. She was in a happy mood again today. She sat up in her tumbleform chair for a little while for physical therapy -- she was super excited when the physical therapist brought some new toys in for her to play with. She also had fun playing for a little while with the occupational therapist.

Thursday, April 15, 2010

Click Clack Moo

Lynnea had a good day in general. This morning she managed to untape much of the tape that was holding her breathing tube in place, so it had to be retaped, which she absolutely hated. She also had a GI study done to make sure that her feeding intolerance is not due to a gastro-intestinal problem. It's not. Everything looked normal from a GI standpoint, so her feeding intolerance is most likely due to the narcotics she's on and/or poor heart function, which is what everyone had already suspected, but it's always good to rule things out. The rest of the day she was happy and playful when she was awake. Also, her PEEP was weaned to 10, and she has done fine with that so far.

This evening, I took Ashlyn to another HopeKids event. She and I, along with her uncle Tim, her aunt Christine, and her cousin Joanna, went to see the play Click Clack Moo, Cows that Type. Ashlyn seemed to really enjoy getting to spend some special time with Mommy, and I certainly enjoyed the time with her as well.

Wednesday, April 14, 2010

Going Slow

Not much new with Lynnea again today. They weaned her PEEP down from 12 to 11, and plan on continuing to work it down very slowly. They area also continuing to very slowly wean her sedation medications. She was very sleepy today, but when she was awake, she was in a good mood.

Tuesday, April 13, 2010

Working on Weaning

Today Lynnea's ventilator rate was weaned from 28 down to 14, and so far she seems to be tolerating it well. I think that the goal is to get her down to a rate of 10 before trying to wean her PEEP (Positive End Expiratory Pressure) again. According to the pulmonology team, this might work better because Lynnea needs the high PEEP to keep her bronchus open, and her bronchus needs to stay open in order for her to continue to clear all of the extra secretions that she has in her lungs right now from this latest infection that she's trying to get over. So, it makes sense to wean other settings before touching the PEEP settings.

Nothing else was changed today. Lynnea continues to do fine without any Epinephrine, which is very good. She worked with both the physical therapist and the occupational therapist today, and she did well with both.

Monday, April 12, 2010

Another Monday

Lynnea is now off Epi again, which is good. Tomorrow they will probably start trying to wean her ventilator settings again; the plan is to try to wean rate first, then PEEP. We'll see how things go from there. She was fever free again today, which is also good news. Nothing else has changed.

Sunday, April 11, 2010


Lynnea showed some definite improvement today. No fevers all day, and her white blood cell count was back down to normal. She still requires a little bit of Epi, but they are weaning it and she's doing OK with that. She was in a good mood today, very playful. We played pat-a-cake, peek-a-boo, and several other games. It was good to see her awake and in such a good mood.

Saturday, April 10, 2010

Not Much Change

Lynnea had an OK day. She spiked a fever of 101.5, which isn't too bad. Her blood pressures were stable (she's still on Epi, but at least she's not continuing to drop her pressures all the time). She still slept much of the day, but when she was awake, she was happy and playful.

Friday, April 9, 2010

A Little More Stable

The rest of Lynnea's day ended up being a little bit more stable that last night and this morning. Her blood pressures continued to dip when she was asleep, but we've managed to come down on her dose a little bit from where it was earlier today. She's on a bunch of antibiotics again, so hopefully we'll see some more improvement over the next 48 hours. Her fever spiked to 101.8, and it's down to 99.5 now. She continued to be very sleepy most of the day again today. Her blood and urine cultures are still all negative, and her sputum cultures are still pending. Hopefully she will improve over the weekend.

A Rough Night

Lynnea had a rough night, and continues to struggle this morning. Overnight her blood pressures continued to run much lower than anyone is OK with (at one point she hit as low as 40/20), and she required a few fluid boluses to try to bring them back up, so in the end, she was put back on Epinephrine. Her temperature spiked up to 102.9 before it finally came down with Ibuprofen. She was also having a very difficult time breathing, so her ventilator settings are back up to a PEEP of 10, with a Rate of 30 (prior to this she was at a PEEP of 6, Rate of 10), which means the ventilator is doing pretty much all of the work of breathing for her again because she can't handle it on her own.

This morning she has required yet another fluid bolus (more blood pressure drops), and they have needed to increase her Epi dose. There is some talk of going up even further on her PEEP, sometime today as well. Her temp is currently 101.8 and climbing. Hopefully she'll stabilize again sometime soon.

Thursday, April 8, 2010

It's Been Two Months

Lynnea has now been in the hospital for two months. Today she had a bronchoscopy, which didn't show anything we didn't already know (her left mainstem bronchus is compressed and only stays open when she's on a high PEEP setting on the ventilator). Blood and urine cultures from yesterday are negative so far, and her sputum looks like it is growing something out, but it's too early to tell what (most likely stenotrophomonis -- the same things it's been growing out for the past two months).

Lynnea was very lethargic all day today, so she slept most of the day. No fevers until this evening, when she spiked again to 102.2. Her blood pressures were fluctuating quite a bit today, and dipping pretty low at times. Because she doesn't seem to be feeling well, no more ventilator settings were weaned today because we don't want to set her up for failure.

Wednesday, April 7, 2010

Return of the Dreaded Fever

Lynnea spiked a fever today. It had been more than two weeks since she had really spiked, so we all thought we were done with this. Apparently not. She got as high as 102.5, and that's with Tylenol and Ibuprofen on board. Cultures were sent, of course.

On a brighter note, Lynnea continues to do well with the ventilator weaning, so we're still hopeful on that front that she'll be able to come off sometime relatively soon.

Tuesday, April 6, 2010

Continuing to Wean

Today Lynnea continued to tolerate both her ventilator wean and narcotics wean. Her vent rate is now down to 12, and she continues to do well. We are still hoping to attempt extubation later this week, or early next week. She also had some physical therapy today -- she sat in a tumbleform chair for a little while, and handled that fine. This morning Dr. St. Louis finally decided to take the stitches out of her chest incision that were put in nearly three weeks ago when she had her chest exploration. She didn't enjoy this at all, but managed to tolerate it without any major problems (we gave her bumps of both pain and sedation meds before hand). She was in a pleasant mood all day, but still very tired much of the time.

Monday, April 5, 2010

Smart Cookie

Today they weaned Lynnea's vent rate a bit from 26 to 18 (not all at once, of course!) and so far it has gone OK. Everyone is hoping to attempt extubation later this week, or early next week. We hope that the weaning continues to go well. They are also very slowly weaning her sedation medications (we started weaning last week, and so far she has done OK). She continues to have difficulties tolerating her feeds though.

Lynnea, with all of her time here at the hospital, has finally figured out how to avoid being pestered by doctors and nurses. Today she decided that every time that a doctor or nurse came to bug her, she would pretend to sleep in hopes that they would leave her alone. She realized that, most of the time, this works out great. So, now whenever a doctor walks into the room (or anyone else she doesn't want to deal with), she closes her eyes and pretends to sleep until they leave, and then she opens her eyes and continues to play. It's very funny.

Sunday, April 4, 2010

Happy Easter

Lynnea's day was OK. This morning during rounds Dr. St. Louis decided that, since Lynnea seems to be tolerating her wean off from the ventilator better than expected, we should not trach her tomorrow. The only reason we were planning on traching her is because we thought that it would take her a long time to come off from the ventilator. Since there now appears to be a chance that she will manage to come off the ventilator in the next week or so, traching her would be pointless. So, the trach plans are on hold at least until the end of this week, or early next week. This was great news. Lynnea showed signs of having a harder time breathing today, but overnight they had tried to wean her ventilator settings faster than they had been over the past several days, and she has never done well with super fast ventilator weans, so they will have to slow down just a bit. Unfortunately she also had difficulties with her feeds today as well. There was a slight increase in her rate this morning, but this evening her feeds have been turned off completely due to her gagging and throwing up. Hopefully she will have a better day tomorrow on that front. She slept most of the day, but when she was awake this afternoon and now this evening, she's been in a pretty good mood - very interactive and mostly happy.

Saturday, April 3, 2010

A Typical Toddler

In general from a medical standpoint, Lynnea had a good day. No major problems to speak of, nothing really different from yesterday (her sat's are back to her normal range). She was in a pretty good mood all day, as long as I was sitting next to her crib so that she could hold my hand (the nurses told me that, even though she would cry every time I tried to leave the room for meals, once I was actually out of the room she was fine again...she is one spoiled baby). She spent a good deal of time today testing limits -- one of her favorite things to do this week has been to tug on the dressing over her incision site while looking at me just to see if I will stop her from doing it, and trying to pull the leads off her chest, again while I'm watching, just to see what kind of reaction she'll get. Yep, it's typical toddler behavior, but still gets annoying rather quickly. (Yesterday when Steve, one of St. Louis's nurse practitioners, came in to look at her incision and said that it no longer needed a dressing on it, I told him he'd better put one back on just so that she has something to pull on that's not terribly important because, without it, I'm sure she would move on to other things like tugging on her breathing tube, which would be really dangerous for her to pull out.) Today she continually wanted movies on, then she would point up to the TV indicating that I was supposed to watch the movie. When I would turn to look at the TV, then she would try to pull her dressing off. It was kind of funny to see her trying to be so sneaky.

Friday, April 2, 2010

Trach on Monday

Lynnea is scheduled for her trach on Monday at 5:30pm. She had an OK day today. Her sat's were really high (in the 90's) much of the day, and no one really has any real reason why, but it is a bit concerning. (With her anatomy, for her sat's to be that high, it means that she is shunting lots of blood to her lung, rather than equally to her lung and to the rest of her body, which in the long run can be really hard on her lung.) She also had a difficult time with the increase that was made in her feeds, so they will have to increase those more slowly. Everything else was fine today.

Thursday, April 1, 2010

The New Plan

I had a conversation with Dr. St. Louis, Dr. Braunlin, and Dr. Gupta today about the new plan for Lynnea. She's going to get a trach sometime early next week. They felt that doing an aortopexy would be pointless because it doesn't make sense to ventilate a lung that isn't profusing. So, no aortopexy. She'll be trached and vented for now; the hope is that eventually she will get off the ventilator, but since it will probably take her quite a while to come off from it, traching her is better than keeping the breathing tube in her mouth. After she is trached, it will also be possible to wean her off from her sedation medications so that we can go home (there's a good chance that we'll go home trached and vented). The big push is to get us home.

As far as Lynnea's cardiac future goes...Dr. St. Louis said that, if her heart function improves, it may still be possible to do a one-lung Glenn sometime in the future, and after that, possibly a one-lung Fontan, but that's a long way out. He also said that we haven't yet ruled out the possibility of a transplant. He still isn't willing to give up on her, even though her prognosis is now considerably worse than it was when we still thought there was a chance to save her left lung.