Archive for November, 2011

Regressions and progressions

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On Thursday, it sounded like Matt was a bit congested. We sucked out his nose a few times, and got out a large volume of very sticky gunk once or twice. After those times, he was breathing easy. But then it would get worse again. By Thursday evening, he was laboring a little bit to breathe freely, and it was affecting his eating – sucking on a bottle, a baby needs to be able to breathe through his nose, but Matt’s was a bit closed off, making it very difficult for him to eat. Breathing takes priority over food. πŸ™‚

By Friday morning, Matt had been eating only half his normal volume for the past four or so feeds due to his breathing troubles. Additionally, his nose got even more blocked up that morning. We are fortunate in that our neighbor two doors down is studying/working to be an ENT doctor, and is a great guy. When Rachel took Abby to the bus stop, she talked to his wife (they also have kids in school with Abby) and his wife said to call if we thought he could help. So, of course we called him over almost immediately upon Rachel’s return to the house from the bus stop. He took a look and listen and recommended that we take Matt in to Children’s (CHP). We agreed with him at that point, so we packed up a few things and I took Matt into the Emergency Department of CHP. (Thank you very much for your assistance, Caleb!)

TL;DR (That’s Internet lingo for “Too Long, Didn’t Read”, coming from the meaning that the story is too long and I’m not reading it all, so sometimes people will put this in their post to “Get to the point” for those that don’t want to read the long version) – I took Matt to the hospital on Friday morning for labored breathing, they fixed him up, and we came back Saturday evening, mostly better.

After arriving at the ED, we got Matt situated, and I started to tell his story to the doctors there, and also requested that they call up to ENT to advise them that he was onsite and see if they would come give their opinion as well. The ED administered Racemic Epinephrine which is a nubulized solution of epinephrine that is inhaled. This had a positive effect for Matt, and before too long, I was able to feed him a bottle in the ED, which also helped him. (You need food!) He did great eating compared to the past few attempts.

The ED thought it might be bronchiolitis and admitted him. They also did call up to ENT. My memory is a little hazy at the order of events at this point, but ultimately, we got him admitted into a room and then the regular pediatricians and such came and took a look at him. There was a small shock for me as we approached his room, and I saw the red tag on his door plaque indicating “Infectious disease precautions” – I questioned it, but the person walking me to the room just asked what I was here for. I thought perhaps it was a leftover from the previous tenant. It turns out, it was for us, due to the thought that it might be bronchiolitis, and they would want to prevent the spread of any infectious disease that could cause that. So, the nurses and staff that came in to do anything had to take precautions and wear masks & gowns any time they entered the room. (Parents of the patient are not required to do so.)

In any case, the pediatricians (an attending and a med student that appeared to be complete with her studies and just fulfilling residency type requirements…I’m not in medicine, so those words might be wrong, to anyone reading this that is in medicine, but will get the point across to most “lay people” reading this. πŸ™‚ ) came up to take a look at him in his room. I went through as much of his history as I could spit out at high speed in 15 or 20 minutes, then they examined Matt. The pediatricians said that he sounded absolutely perfect in the lungs and all the lower airways and that they felt it was entirely upper airway. I agreed with this 100%. (This contraindicated the bronchiolitis theory.) We all felt it was due to his previous ENT/nose history. (This was also the last major discussion of any infectious disease, though they did still have to take precautions until that was officially cleared, which it was at a later point.)

ENT then came up and took a (painful) look at him (with a basic bedside endoscope) and said that things were closed down pretty tightly in his nasal passages. The ENT fellow said that he’d talk with the ENT attending doctor that did Matt’s original procedure and get right back to me. (The attending was in surgery at the time.) The fellow came back and said that it’s likely they will need to perform a balloon dilation of the spot they had originally opened up in Matt. It looked like the tissue at the surgical site had collapsed (or done something else that looked like that.) They put Matt on the ENT surgical schedule as an add-on and said they would perform a nasal endoscopy with possible choanal dilation. (Meaning they’d take a look in his nose with the good endoscope to determine for certain the conditions they were dealing with, and then perform the balloon dilation if it still looked like the right course of action.)

They didn’t call up from the OR until around 8PM, and by this point, Matt was having some real trouble passing air. He was retracting and laboring very hard to breathe. The poor kid was getting worn out just trying to breathe. πŸ™ It took so long because there was another ENT surgery that started at 1PM that apparently got more involved than they expected and they weren’t done until after 8PM. (We were in surgical prep when they finally finished up.) Then we had to wait for them to clean the OR and prep for Matt.

They took Matt back sometime around 9PM or 9:30PM, and I went to get a quick bite to eat in the cafeteria. Before I had even paid for my food, the attending ENT doc. called my cell to say that they were done and that Matt did great, and it was what they thought, so they did the dilation procedure.

I ate quickly then headed to the recovery room. When I got there, they had apparently just gotten Matt all settled. He was worse. His nose was almost completely occluded and he was retracting and laboring more than I’d ever seen. Basically, his lungs (diaphram, etc.) were trying to pull air into his body, but his upper airways were blocked. He wasn’t aerating every time he tried to breathe… The recovery nurse of course wasn’t comfortable with sending him up to the floor in this condition (Uh, NO!) and started calling around, first to anesthesia then to the ENTs. The main ENT staff was already gone; the ENT resident was over at Presby. She drove over right away and came to look at him and help.

After some suction showing that he had a lot of secretions and fresh blood up in his nose, the ENT resident flushed out his nose with saline and some suction. They also administered two drugs to help dilate the airways. One was put in through his IV and I’m not certain (now) what it was called, and then they also applied another treatment of racemic epinephrine. Once that was all done, he sounded like a different kid. He could actually breathe! πŸ™‚

They are required to monitor him closely for at least an hour after the racemic epi is administered, so we settled in for a bit, and I was holding him. He was doing this “periodic breathing” though, where he would breathe just fine for a bit (a bit in the terms of seconds 6-15 seconds?) and then just stop breathing for roughly the same amount of time (6-10 seconds) – so his oxygenation was going up and down during this time. (Nothing terribly serious or damaging, but noticeable.) I think this was due to his body being completely worn out from working so incredibly hard to breathe for over 24 hours. (It was around midnight by this point.)

Despite the periodic breathing, he was doing ok, so a bit after the hour of monitoring (after the racemic epi), he was sent back up to his room. Due to the fact that he was still periodic, they got a respiratory specialist to come in and setup some blow by oxygen to keep his O2 levels up during the night. Once I saw he was oxygenating at 99-100% with the blow by, I decided to lay down and sleep. (It was a hair after 1AM at this point.)

In the morning, Matt was doing a lot better, but still a little bit periodic. Not as bad as the night before, but still noticeable. However, he was breathing so clearly, that I fed him, and he ate like a champ! He finished his bottle, breathing free & clear the whole time. Then promptly back to sleep for him.

Someone from ENT came to check him out and was very pleased with his status and said they felt comfortable sending him home that day (Saturday) if he was breathing OK later and if I was comfortable with him going home. The plan was to check him out around 3 or 4PM and send him home after that. At that time (in the morning, post discussion), I felt that if he was still doing some of this periodic breathing in the afternoon that I would recommend he stay another night for close monitoring. By the time I was done feeding him again, though, he seemed to have regained enough energy to stop the periodic breathing, and I felt much better about his status.

By mid afternoon, he seemed 100%. He was breathing just fine, and normally, and eating very well, so I felt comfortable with being discharged, so we headed home around 5PM on Saturday.

He has been doing very well ever since, but we feel his left nostril is completely occluded again. We apply saline to both sides of his nose every few hours to help flush away secretions and assist with the healing, but his left side is so closed down that when we apply suction with the blue bulb, it doesn’t inflate at all. Zero air movement through there. We *DO* manage to get a little saline through, but that’s via force of water, so we’ll see what happens.

So far, though, he’s been doing pretty well, and eating well. Glad to have him home again and breathing OK. We’ll let you know what happens in the long run with his occluded nostril and followup appointments and such.

Thanks for reading. I know it was long. πŸ™‚

— Dave

Matt is Home!!!

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To those of you who aren’t on Facebook, Matt is home. Children’s Hospital released Matt on Monday afternoon after having a very good weekend of feeding and weight gain. That was the criteria for Matt coming home. He needed to be taking his thickened feeds via a bottle, gaining weight, and not having any respiratory distress. He had done well all weekend taking between 40 and 60 mL of his thickened formula. Both occupational therapy and speech therapy watched him take a feed on Monday and they both said his suck is getting much better and he is doing so well. He will have to follow up with the eating clinic to have them watch his progress, but otherwise he is good to go. The eating clinic is where they will determine if he can reduce the amount of thickness of his feeds.

You should see the discharge packet they gave for him though. Wow, he has a lot of followups to be done. It seems like everyone who saw him at one point or another want to follow up with him in either a month, 2 months, or 6 months. Some of the appointments were already made by the staff and Children’s hospital and some we have to make. It is going to be a busy year.

We arrived home around 5:30pm. The kids were so excited to have baby Matt home. I think the pictures just say it all.

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Abby doing shadow puppets on the back porch for Matt. This was a bunny according to Abby.

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Abby holding Matt for the first time. She did so well and she is so gentle with him.

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Big brother Zach holding Matt for the first time with Mommy’s help of course.

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Soon enough Matt will be playing trucks with his big brother.

Tummy Time:
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Big Sister Time:
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Feeling of Futility

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Yesterday and today were hard days for me. They felt like days of futility.

They started Matt on his thickened feeds, which was very exciting to hear they were going to start. When I arrived at the hospital yesterday I came in and saw he still had the feeding tube and was receiving his full feed via it for his noon feeding and there were bottles of formula in the room. When we received the news that he would be starting bottle feeding with thickened feeds Monday afternoon it was not well explained that it would not be breast milk and that it would take him a while to get to his full feeds via the bottle. I guess my expectations of him feeding were too high. Since Matt had not been nursing or bottle feeding from the start due to his nasal issues and then when they did begin feeds it was via a feeding tube due to him aspirating he would now have to learn how to feed at 22 days old. For a baby sucking is a natural thing and normally they quickly learn how to make that get them food. Matt has been getting food and not having to work for it since it was through the feeding tube. This means he doesn’t quite understand that he actually has to do something to get food.

Of course my initial reaction was to call Dave and freak out to him prior to talking to anyone at the hospital. The nurse was not in the room and I had no idea who it was. With being in the step down unit now I can just let myself into the unit with my hospital card and no one calls the nurse to see if I can come back. In the NICU the main desk had to call the nurse taking care of Matt to see if it was OK for us to come back. I am guessing to make sure they were not in the middle of any procedures and that he wasn’t away from the floor for any testing.

So anyways…I called Dave to vent my frustration at what I was seeing in Matt’s room and the fact they were using formula. It’s not that I am against formula. Abby was fed formula after failed attempts at nursing and not having a great pump at the time to keep my supply up. She was on full time formula by 5 months. Even though I was working after I had Zach, due to having a great pump (Medela Lactina Select), I was able to provide him breast milk until 9 months and then he transitioned to formula as well prior to going to whole milk. My issue was just that I was pumping, had a good supply, and was going through the process of pumping. Just because my newborn wasn’t home yet didn’t mean I wasn’t waking during the night to “feed”. I am pumping every 3 hours even during the night to keep my supply up and because if I don’t there is pain and leaking involved. For anyone out there that has pumped or nursed you know what I mean if you miss a feeding or pumping session. Due to all the stress of trying to manage life at home with my other 2 children, all the issues with Matt since birth, and lack of sleep (you don’t get much real rest during pumping sessions at night) I of course was quite upset.

The nurse came in after I got off the phone with Dave and I questioned her about what was going on since I had not been able to make it for rounds. She told me that the reason the formula was in the room was that was what they were giving him via the bottle. She said they couldn’t thicken breast milk with rice cereal due to the enzymes in the breast milk breaking down the rice cereal too rapidly. It was not safe to use because if the milk got too thin for Matt he would begin aspirating again. I told her how the previous doctor had checked and there was a way to thicken breast milk with something other than rice cereal. I also questioned her on why he still had the feeding tube and why he was receiving a full feed via it for his noon feeding. Since Matt has to learn to take a bottle and it is a lot of work to take the thickened feeds they will only feed him a bottle for 15 minutes at most. Anything he doesn’t take via the bottle will then be given to him via the feeding tube. The stuff that goes in the feeding tube will be the breast milk though, not the formula. It was good to hear at the time my milk wasn’t going completely by the wayside and that he would still be receiving it for now until he can take full feeds.

The nurse left and then the charge nurse returned to explain more of the feeding stuff to me and why they couldn’t use the breast milk. I guess there was a product on the market to thicken breast milk, but it was just recently removed. The nurse was not sure the reason it was removed. There is now no safe method to thicken breast milk, so it can’t be used. Ugh, very frustrating! During these conversations I was on the verge of tears and just wished that Matt could feed like normal and come home. Why did something that should be so natural have to be so difficult for him?

For his 3pm feeding I attempted to give him his bottle. When they said thickened feeds I was not expecting what I received. According to his cookie swallow the ratio that was safe for him to take via a bottle was a 1 to 1 ratio. This means 1 Tbs of rice cereal to 1 once of formula. It was thicker than what I would give my baby for their first attempts to eat via a spoon. I was not sure how he would be able to suck this out of a bottle. The nurse stretched the nipple to have a wider opening (cross cut nipple) to help him to be able to get the feed out. Matt worked really hard for 15 minutes and had some really good sucks. I was so encouraged at how well I thought he was doing until we took the bottle away and saw he had only taken 1cc of the feed. All that work he had done and he got 1 cc. I was even more livid with the whole situation at this point. I decided that I needed to go in for rounds the next day to voice my concerns and see if we could get the thickness reduced so that he wasn’t working so hard for what seemed like futility.

I arrived this morning around 9:30 and they hadn’t rounded yet. They actually didn’t get to Matt until almost 11:45. The nurse was the same one Matt had yesterday. She was very excited at his progress. They continued to try and give him a bottle at all his feeds during the night and the nurse said that he had taken 30-45cc at each feed. That is half his feed via a bottle. For his first day of using a bottle that was amazing. I was very encouraged and in shock. The nurse said they had to stretch the nipple more than they previously had so that he could take the bottle and not get too tired out before he really got anything.

When the doctor came around for rounds I expressed my concern about how thick his feeds were and how I felt he was working so hard for nothing. She of course explained again why the feed had to be so thick and maybe the thickness could be reduced in time, but it didn’t sound like that was going to be done anytime soon. I asked if they would redo his cookie swallow in time and the answer was once he is discharged he would go to a feeding clinic and they would follow his progress and determine if the thickness could be reduced. Not exactly what I wanted to hear.

I tried again to give him a bottle for his 3pm feed. The speech therapist gave him his bottle for his noon feed to see how he was doing. She was able to get him to take 15cc. At his 3pm feed he was doing really well and I saw air bubbles coming up in his bottle so this time I knew he was getting it. He took 10cc for me, but he was pretty sleepy so that was all for that feeding.

Now comes my 2nd bout of feeling of futility, my pumping. The actual pumping is going quite well. I have a nice stock pile in the freezer and more at the hospital. Now it seems futile for me to continue pumping if Matt will have to be on formula and thickened feeds the entire time. I have no idea if we will ever get him to the point where he could take breast milk through a bottle or even better nurse. It gets me to where I don’t want to keep losing sleep to pump if Matt will never use it, but isn’t something I can take back once I stop pumping. Once I wind down there is no real winding back up if all of a sudden Matt can use the breast milk. Oh the dilemma. For now I will continue in my possible act of futility as Matt continues to learn how to feed. My hope would be that Matt will catch on and his aspiration issues will be resolved so he can use the breast milk.

Update on Matt and Halloween

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First the update on Matt. Matt had his cookie swallow test yesterday to see if he is still aspirating his food since getting his stents out. He passed his test with a thickened feed. They are starting to feed by bottle with additional rice cereal in his milk to help him swallow it properly this morning. The feeding tube will no longer be needed if he does well. That is great news! Now we wait to see how he does and then there may be a plan for him coming home.
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At the hospital they had given Matt a little Halloween costume too. Enjoy the cuteness!
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Halloween was a blast! The kids had so much fun even though it rained. At first Zach did not want to be in his costume and kept trying to pull it off, so that is why there aren’t great pictures of Zach in his costume. He refused to wear the head piece that had the ears on it, but he wore the rest of the costume. After the kids were done going around to the houses to get candy they loved helping to hand out the candy to the kids still coming to our house. Grandma and Pap had come over to help hand out the candy while we took the kids around. We did not have as many kids come this year and all the years past probably because of the rain. We now have tons of left overs. Too bad we didn’t get anything chocolate this year. Lots of Dum Dums and Smarties left over.

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