I haven't given an update lately because there hasn't been much to report! Lyla looks so much better! She is actually looking older too. (it has been 3 weeks...) At this point she is stable. Her breathing rate has slowed, her O2 stats are good, and she's not spitting up.
Right now the main concern is her weight. We have to get her bigger so she can be ready and strong for her surgery. (At this point we still don't know when the surgery will be. Or which one it will be) Dr. Evans explained today that they would like to see her consistently gaining over 5-7 days. Then they will try feeds through the Gtube. If she doesn't tolerate her feeds this way, GI will probably step in and assess. She will likely get a tube(J Tube?) placed to take her feeds from the Mic-Key button to her small intestine so they can take the ND tube out. However, they will still need to insert a NG tube (down nose to tummy) for us to administer her medicines.
Received RSV vaccination
Friday, November 30, 2012
Day 18, Tuesday
Lyla has gone two days without spitting up! Wahoo! Still coughing and wretching (not as bad or often) which has made her feel miserable. And look pretty darn miserable too. Breathing has slowed and her fits are getting fewer too!Lovenox shots 2 times a day to treat blood clots resulted from Central Line. These are given into her tummy. (abdominal wall is best place) As a result, her poor little tummy has a ton of poke marks. I will have to take a picture of this because it looks so terrible. She gets upset for just a little bit after the shot, but recovers pretty fast.
Tuesday, November 27, 2012
Day 17, Monday November 26th
Today Lyla is 2 months old. Out of the 9 weeks she's been on this Earth, we have had her home 2 of those weeks. People ask how Parker and Mabel are through all this and they have been so great. To them, this is the norm. When you have a baby, they stay at the hospital for a really long time. They know no different. They know Lyla is their sister, they are excited she is not in Mommy's belly anymore, and they ask about her or talk about her everyday.
The highlight of today was Lyla getting her Mic-Key button. This is what replaces the Gtube after 6 weeks. The tube was removed this evening and Lyla did great! Hardly a fuss. Interesting to note that after the tube was removed, the nurses noticed that the stitch that was on the tube in the inside of her tummy was really tight. This may have been the cause of her tube clogging... Today, she has actually been doing great as far as not having any fits or spitting up! She isnt getting any food in her tummy (just her small intestine) so that explains the no spitting up. But she still has been coughing and hacking a little like she wants to throw up, but there is nothing to come out. Frustrating. I think the plan may be to insert a line from the mic-key button to her small intestine so she doesn't have to have the ND tube in her nose. This way she can continue to gain weight and not spit up. However, the longer she goes without getting food in her tummy, the smaller her tummy can get and therefore messing her up later to not be able to get enough volume. Frustrating.
(When feeding through the mic-key, the button pops open and the tube line connects into the button and you turn to lock it in. This is how it is shown. When the tube is disconnected the button is very similar to the thing on a beach ball that you blow air into)
She has also been getting a shot twice a day (in her tummy) with a drug to help the blood clots in her leg that formed as a result of the Central Line that was put in. These, as you can imagine, are terrible. It is suppose to be for three weeks and I think we are on a little over two weeks, so hopefully the clots are getting better. Cheryl (primary nurse) said they should be checking on her clots soon. Fingers crossed.
Off Digoxin. Said it wasn't working/doing anything.
Off Reglan, may be causing spitting up.
The highlight of today was Lyla getting her Mic-Key button. This is what replaces the Gtube after 6 weeks. The tube was removed this evening and Lyla did great! Hardly a fuss. Interesting to note that after the tube was removed, the nurses noticed that the stitch that was on the tube in the inside of her tummy was really tight. This may have been the cause of her tube clogging... Today, she has actually been doing great as far as not having any fits or spitting up! She isnt getting any food in her tummy (just her small intestine) so that explains the no spitting up. But she still has been coughing and hacking a little like she wants to throw up, but there is nothing to come out. Frustrating. I think the plan may be to insert a line from the mic-key button to her small intestine so she doesn't have to have the ND tube in her nose. This way she can continue to gain weight and not spit up. However, the longer she goes without getting food in her tummy, the smaller her tummy can get and therefore messing her up later to not be able to get enough volume. Frustrating.
(When feeding through the mic-key, the button pops open and the tube line connects into the button and you turn to lock it in. This is how it is shown. When the tube is disconnected the button is very similar to the thing on a beach ball that you blow air into)
She has also been getting a shot twice a day (in her tummy) with a drug to help the blood clots in her leg that formed as a result of the Central Line that was put in. These, as you can imagine, are terrible. It is suppose to be for three weeks and I think we are on a little over two weeks, so hopefully the clots are getting better. Cheryl (primary nurse) said they should be checking on her clots soon. Fingers crossed.
Off Digoxin. Said it wasn't working/doing anything.
Off Reglan, may be causing spitting up.
Sunday, November 25, 2012
Day 16
Today the nurse put back the ND tube for Lyla's feedings. This is the tube that bypasses her tummy and goes to her small intestine. The problem with her spitting up was unfortunately unresolved. She did better with the 27cal but apparently was still spitting up. I think she was wretching less, but since she is already too low on her volume and calorie intake, Lyla spitting up doesn't leave her with much nutrition.
Surprisingly she did pretty good while the nurse was placing the tube. She was pretty upset, but it didn't take as long for her to settle. Shortly after the ND was placed, she had an Echo taken of her heart to see how the regurgitation is while she is upset. The Dr. (matiff) was a little surprised to see that it was less than a previous Echo, which is good, but leaves them without an answer to why she gets so upset during her fits. We got some pretty good snuggling time afterward. It felt really good and comfortable. I loved it! And I think Lyla did too:)
Then it was time for an X-ray. After the nurse places the ND tube, they must get an X-ray to check that it made it passed the stomach and to the small intestine. It did not, which happened the last time they placed one. It coiled in the stomach, so she had to play with it and move it around. The nurse (Cheryl) even had the Ativan ready for Lyla, but she did great and didn't need it!
Later we snuggled some more and she got a little upset but I was able to calm her. Turned out she had pooped and I would have never guessed.
Had another purple episode around 8pm:(
Surprisingly she did pretty good while the nurse was placing the tube. She was pretty upset, but it didn't take as long for her to settle. Shortly after the ND was placed, she had an Echo taken of her heart to see how the regurgitation is while she is upset. The Dr. (matiff) was a little surprised to see that it was less than a previous Echo, which is good, but leaves them without an answer to why she gets so upset during her fits. We got some pretty good snuggling time afterward. It felt really good and comfortable. I loved it! And I think Lyla did too:)
Then it was time for an X-ray. After the nurse places the ND tube, they must get an X-ray to check that it made it passed the stomach and to the small intestine. It did not, which happened the last time they placed one. It coiled in the stomach, so she had to play with it and move it around. The nurse (Cheryl) even had the Ativan ready for Lyla, but she did great and didn't need it!
Later we snuggled some more and she got a little upset but I was able to calm her. Turned out she had pooped and I would have never guessed.
Saturday, November 24, 2012
Day #15
Arriving to the hospital this morning, the nurse tells me that Lyla had one of her fits... But this one was pretty bad. She's turned purple before, but apparently this was worse. It is so scary to hear this about your little baby, and to know you can't do anything to help. And when the doctor starts talking about not wanting these fits to lead to a heart attack or cardiac arrest.... I don't know what to do or say. Basically her heart needs to be fixed, and if it were that easy, they would have done it by now. But there are all these factors and risks that need to be weighed. Doing it now with just being over (we think she is over it) the virus, her size, and her history makes the risks increase so much more. And she would likely need repair down the road. Doing the surgery later, if she can get bigger, would be less risky and have less chance of additional repair. But will she grow/gain enough weight in time?Will she even make it?
We need the doctors and nurses to really know what is going on with Lyla. We need her to not have these fits, for her blood pressure to stay down and her heart and lungs to not be flooded with extra blood. We need her to gain weight and keep growing!
We are so grateful for the prayers and support we have gotten from so many of our friends and family.
We need the doctors and nurses to really know what is going on with Lyla. We need her to not have these fits, for her blood pressure to stay down and her heart and lungs to not be flooded with extra blood. We need her to gain weight and keep growing!
We are so grateful for the prayers and support we have gotten from so many of our friends and family.
A Big Step
Friday, November 23rd
(Look! No tubes in my nose!)
Today they took Lyla off oxygen!!! So far she has been good keeping her O2 stats up where the Dr.'s want it, except for when she throws her fits... And she is well known with the nurses for her fits. Unfortunately when she has to pass gas or poop, she gets really upset and uncomfortable. And when she's upset her blood pressure rises and because of leaking in her one existing valve, blood flows uninhibited to her lungs and even back in the direction it came from which makes her even more uncomfortable. This usually results in the nurse giving her a drug called Ativan to "take the edge off". We don't want her to be uncomfortable either, but we also don't want her to become dependent on this drug...
She is still on continuous feeds.
Nurse today mentioned that she might go home with a stat monitor.
I got to snuggle her today:) the other two times I've gotten to hold her she had more wires and the central line in her leg so it was really hard to hold her. She didn't seem too comfortable and I wasn't either. And now that she is eating from her Gtube, it's still hard to hold her easily. It's been extremely difficult to not get to snuggle her. I hate seeing her just lying in the bed and I worry she won't like touch and snuggling (Parker had been this way too from his hospital stay).
Dr.'s still concerned with her breathing fast.
(Look! No tubes in my nose!)
Today they took Lyla off oxygen!!! So far she has been good keeping her O2 stats up where the Dr.'s want it, except for when she throws her fits... And she is well known with the nurses for her fits. Unfortunately when she has to pass gas or poop, she gets really upset and uncomfortable. And when she's upset her blood pressure rises and because of leaking in her one existing valve, blood flows uninhibited to her lungs and even back in the direction it came from which makes her even more uncomfortable. This usually results in the nurse giving her a drug called Ativan to "take the edge off". We don't want her to be uncomfortable either, but we also don't want her to become dependent on this drug...
She is still on continuous feeds.
Nurse today mentioned that she might go home with a stat monitor.
I got to snuggle her today:) the other two times I've gotten to hold her she had more wires and the central line in her leg so it was really hard to hold her. She didn't seem too comfortable and I wasn't either. And now that she is eating from her Gtube, it's still hard to hold her easily. It's been extremely difficult to not get to snuggle her. I hate seeing her just lying in the bed and I worry she won't like touch and snuggling (Parker had been this way too from his hospital stay).
Happy Thanksgiving
Thursday, November 22nd Day #13
Well Lyla was suppose to go on her regular home feeding schedule, but the Dr. wanted to keep her on continuous feeds before changing too much at once. They also bumped her calorie fortifying from 27 to 30. This led to a long stretch of the day where Lyla was gagging and wretching. She was so miserable. It finally clicked that it was the calorie increase, so they switched her back to 27cal and she has been tolerating fine. The 30cal must be too dense for her tummy which is a bummer since we need her to gain weight.
The nurse was also able to get an IV in!!!! Lyla doesn't need one, but the Dr.'s wanted her to have one for emergencies.
Well Lyla was suppose to go on her regular home feeding schedule, but the Dr. wanted to keep her on continuous feeds before changing too much at once. They also bumped her calorie fortifying from 27 to 30. This led to a long stretch of the day where Lyla was gagging and wretching. She was so miserable. It finally clicked that it was the calorie increase, so they switched her back to 27cal and she has been tolerating fine. The 30cal must be too dense for her tummy which is a bummer since we need her to gain weight.
Thursday, November 22, 2012
Catch Up
So we can remember later, I'm going to just note the main things that have happened in the last couple of days.
11/18 moved down from 8 to 7L on the oxygen, high flow
11/19 moved down from 7 to 5 and then 4L. She was doing ok, but they wanted her o2 stats in the 90's and she was hanging around 88.
Inserted a NG tube to help with the extra air in her tummy coming from the nasal cannula. This tube goes down her nose and stays in the tummy and suctions the air out. Not thrilled with this, but she does get really upset when she has gas and/or needs to poop. (Blue tube in picture below)
Dr. Choi, one of the cardiologists stopped in and we talked about possible scenarios for Lyla's surgery. Basically the cardiologists, Dr.'s and surgeon will have to reassess where her heart condition stands once this virus passes to decide which direction to go. Ideally the surgeon would like her to be closer to 6 months, but Dr. Choi and Dr. VanGundy feel strongly that Lyla won't make it to 6 months before needing surgery. Before this hospitalization she was headed to be admitted for a pulmonary band surgery within the next week (last week). And now with her history of not gaining weight and
her struggles this time around in the hospital, they feel surgery will need to be before 6 months.
Ideally she should wait 6 weeks post virus, which would at least get her past 3 months. But if she doesn't do well in those 6 weeks, surgery will happen. ( which surgery; total repair or pulmonary band, TBD)
From what I remember and understood from our conversation, is basically since Lyla's heart is not complete, like a hole in the middle, the blood doesn't flow as it should in one nice circulatory motion. It follows the path of least resistance. This is probably the pulmonary way since she has extra fluid in her lungs, too much going in and not enough pumping out. Her heart works so hard and she basically uses all her calories/energy just to breath.
11/20 moved down from 5 to 4L on the oxygen.
Removed NG tube
Talk about removing central line IV, but need to insert an IV for emergency
Turned off Milranone, and started Caprical(sp?)
11/21 now on 3L
Removed ND tube ( the one going down to her intestine) she was pretty PO'd about this and they had a hard time calming her. Gave her some adavan.
Started feeds through Gtube continuously, vented.
Were unsuccessful finding a vein for the IV.
11/22 started her on home regimen feeds. Continuous through the night and 4 bolus feeds during the day.
11/18 moved down from 8 to 7L on the oxygen, high flow
11/19 moved down from 7 to 5 and then 4L. She was doing ok, but they wanted her o2 stats in the 90's and she was hanging around 88.
Inserted a NG tube to help with the extra air in her tummy coming from the nasal cannula. This tube goes down her nose and stays in the tummy and suctions the air out. Not thrilled with this, but she does get really upset when she has gas and/or needs to poop. (Blue tube in picture below)
her struggles this time around in the hospital, they feel surgery will need to be before 6 months.
Ideally she should wait 6 weeks post virus, which would at least get her past 3 months. But if she doesn't do well in those 6 weeks, surgery will happen. ( which surgery; total repair or pulmonary band, TBD)
From what I remember and understood from our conversation, is basically since Lyla's heart is not complete, like a hole in the middle, the blood doesn't flow as it should in one nice circulatory motion. It follows the path of least resistance. This is probably the pulmonary way since she has extra fluid in her lungs, too much going in and not enough pumping out. Her heart works so hard and she basically uses all her calories/energy just to breath.
11/20 moved down from 5 to 4L on the oxygen.
Removed NG tube
Talk about removing central line IV, but need to insert an IV for emergency
Turned off Milranone, and started Caprical(sp?)
11/21 now on 3L
Removed ND tube ( the one going down to her intestine) she was pretty PO'd about this and they had a hard time calming her. Gave her some adavan.
Started feeds through Gtube continuously, vented.
Were unsuccessful finding a vein for the IV.
11/22 started her on home regimen feeds. Continuous through the night and 4 bolus feeds during the day.
Friday, November 16, 2012
Hospital Stay #3 - Day #6
Not too much happened today. The plan is to get over this virus and reassess her heart and possible surgery. She went off the Milronin drugs for her heart yesterday, but really had a hard time with oxygen flow in her extremities, so later in the evening she went back on it.
In the video you can see her fighting going to sleep - which is exactly what her brother and sister do all night long. I guess we know where she gets her spunk from.
Medications:Tylenol (fever); Digoxin (heart); Enoxaparin (heart); Furosemide (lasix); Zegerid (omeprazole antacid); Multivitamin (Poly-vi-sol); Spironolactone (aldactone); Heparin; Milrinone (back on it for the 3rd time - drs are trying to get her off)
Nurse: Jessica (day);
Thursday, November 15, 2012
Hospital Stay #3 - Day #5
Lyla had a pretty good day today as she tries to recover from her virus. All the results have come back negative for a virus, but she is obviously sick, along with everyone else in the family and is coughing quite a bit. Her hemoglobin levels are getting low (10), which we're told is normal for a baby of about 6 weeks old. To help her get the extra oxygen support and blood help she needs, she received a red blood cell transfusion last night at about 8PM. We'll see how she handles it, but the consensus among the doctors is that this will help her oxygen transport to the rest of the body and get her functioning near normal to aid her recovery.
Today's Nurses: Cheryl (day); Courtney (night)
Medications:Tylenol (fever); Digoxin (heart); Enoxaparin (heart); Furosemide (lasix); Zegerid (omeprazole antacid); Multivitamin (Poly-vi-sol); Spironolactone (aldactone); Heparin; Aldactone (diaretic - new to replace Milronine)
Tuesday, November 13, 2012
Hospital Stay #3 - Day #4
After a crabby morning, Lyla is doing better today. Her temperature looks good, and her stats are hanging in there. They did add an additional feeding tube through her nose so that her food could bypass her stomach and go directly into her duodenum to keep her from spitting up. She's susceptible to this due to her high-flow oxygen through her nasal cannula. So far she is doing well but oxygen had to be adjusted upward to keep her O2 saturation levels in the the 90's after a fit she threw when getting the line inserted.
She's been through a lot of poking and prodding, and she'll let you know when she doesn't like it. A trait I admire in all our kids - I think it shows she'll have great determination to get what she wants out of life.
Medications: Tylenol (fever); Digoxin (heart); Enoxaparin (heart); Furosemide (lasix); Zegerid (omeprazole antacid); Multivitamin (Poly-vi-sol); Spironolactone (aldactone); Heparin; Milrinone (heart).
Monday, November 12, 2012
Hospital Stay #3 - Day #3
Menegitis Results: Negative, no infection
Urinary Tract/Kidney: Negative, no infection
Viral Lung Infection: Awaiting Results - but she is obviously sick
The results come as a huge surprise to us. The bacteria that was found in her spinal tap was merely a contamination of the sample and did not match the profile for meningitis. This is a huge relief to us along with the results regarding her urinary tract infection. What this means is the fever she was having is related to her viral infection (cold/flu), and she's been immediately taken off antibiotic medication. She'll continue to be monitored at the hospital while she's stabilized and monitored for her partial heart failure. This could be for quite some time since the cardiologist had planned for us to be admitted to the hospital on 11/16 anyway if she had not gained weight by that time and she still has a host of other heart related and respiratory issues to keep her busy.
Nurses: Melissa (day) - Amy (night)
Medications: Tylenol (fever); Digoxin (heart); Enoxaparin (heart); Furosemide (lasix); Zegerid (omeprazole antacid); Multivitamin (Poly-vi-sol); Spironolactone (aldactone); Heparin; Milrinone (heart).
Sunday, November 11, 2012
Hospital Stay #3 - Day #2 ; Heading in the Right Direction
Its a hard thing to give updates when things were headed in the wrong direction. Fortunately that's not my assignment today. As of this morning Lyla was on a ventilator having bronchial spasms, and has a central line iv for most of the medications she's getting.In the afternoon her ventilator was removed and replaced with a nasal cannula for oxygen at 41%, then later reduced to 35% saturation.
She continues to receive the antibiotic setriati to help with her kidney and urinary tract infection.
And her spinal bacterial infection is not identified, but is known not to be a typical meningitis strain. We should know soon from the lab results, and also regarding a viral infection in the lungs (which would make sense since the rest of the family is sick with a cold).
Her fever from Friday night resurfaced as well, and hit about 38`c this evening.
Nurses: Shelly (day); Catherine (night)
Medications: Degoxion (heart), zegerid (antacid), dopamine (blood pressure), striati (antibiotic), lenacid (antibiotic), tylenol (fever reducer), isobutyl puffer (for tube removal), ferosemide (lasic), morphine (sedation)
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