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It’s been a while . . . and Matt’s back in the ICU . . .

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It’s been a while since I posted last. Matt was at home and doing very well for two weeks. (After we got home from the hospital trip referenced in my last post.) He was breathing fine, eating great, and just being a pretty easy-going baby. (Unless he was mad about being hungry; then he was prone to occasionally holding his breath . . . but it wasn’t too bad.)

We had a great Thanksgiving and had family over to our house on Friday after Turkey Day, which was awesome, as well. We got to visit with my brother & SIL, and the kids got to play with their cousins all day. We all had a wonderful time! Matt seemed to keep clogging up his nose that day, though; we had to keep working on him to keep him breathing OK. At Matt’s midnight feeding, he was having some breathing issues and due to that, wouldn’t eat much. It was bad enough that we thought we should take him into the hospital, so I got ready to go, packed him up, and headed to Children’s. We checked in at 1:52AM on Saturday, November 26th. 🙂

They checked him out in the ER, since that is the path to admission at that time of the day, and it turns out, he had a mild fever. But, he is not yet 60 days old, and anytime a baby under 60 days old has a fever, they like to do a full workup to check for bacterial infections. So they took his blood, urine, and attempted to do a spinal tap, but he got pretty mad about being squished up for the spinal and stopped breathing. Fabulous. He recovered quickly, though.

Nonetheless, the primary reason he was there was for his nose, and ENT came to check him out, probably around 7:30AM or so; once primary staff started to show up to the hospital. They determined that there was some scar tissue in one nostril, and I don’t remember what they said about the other one now, but the decision was to get him on the OR schedule to have his nasal passages opened back up and then place the stents back in his nose to facilitate healing, in an attempt to prevent this from happening again.

We had just gotten up to his admission room when the OR called the nurse to say they were ready for him, so we got him down to the OR prep, and into surgery. After that, he was put into the ICU (PICU) for monitoring and recovery. Surgery went well, stents were placed, he was doing OK. (They also did the lumbar puncture for spinal fluid in the OR since he was sedated at that time.)

The results of all the bacteria cultures I mentioned were negative, which is good. No scary infections. There was one more culture they took – it was of mucous the ENT Fellow had pulled out of his nose in the ER; it had some bacteria growing, so they switched up his antibiotic medicine to compensate for that. (He was and will be on antibiotics until the stents are removed due to them being a foreign body, which is why I say “switched.”)

To make this long story shorter, I’ll just say that there was a few days of frustrating fiasco, including Matt being moved to a step-down unit, then back to the PICU, but by Wednesday evening, some things had been seen by the ENT group that finally put us on a positive path. Thursday had some issues again, but by Thursday night, things were going well. Matt is now breathing fairly well, there is a positive plan for progress, and we are finally somewhat satisfied with the status of things with Matt in the PICU.

Some of the meds they were using to try to soften & thin Matt’s crazy-thick mucous irritated his throat, which caused some eating issues, which were later resolved, but then he kicked out his IV that was just being used for maintenance fluids, and in the end, they placed an OG feeding tube (via mouth, down his throat.) We are satisfied with this. He is getting breastmilk via the OG tube, and they are giving him more than he was eating on his own, mainly to make certain he is well hydrated. In addition to that, they have him in a “tent” that is being used for humidification to keep his secretions (mucous) thinned. It gets pretty foggy in there at times, and his hair gets so wet from it, but he is tolerating it well, and it seems to be helping, as the nurses are able to suction his stents effectively, and he is continually breathing fairly well.

He is still in the PICU, and we don’t know yet when they may send him home, but we aren’t in a hurry if it means he’ll be able to breathe. (I don’t know if he’d be sent home with the tent, OG tube, regular suction of the stents required, and so forth . . . and we’d be more comfortable with him in the ICU if he needs constant care like that, even though it is difficult traveling in every day while having two other kids at home plus it being the holiday season and all; but my mom has been absolutely wonderful in helping out at home, especially with watching Zach while Rachel is at the hospital and I’m at work.)

So there you have it – a longish short update on Matt’s current status and what is happening in his world.

Here is a picture of him in his sauna tent taken yesterday (Thursday, Dec. 1) via Rachel’s cell phone:

Matt in his tent in the PICU 2011-12-01

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. 🙂

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. 🙂 ) 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. 🙁 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! 🙂

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. 🙂

— Dave

Matt’s stents are gone!

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Well, Matt’s stent removal procedure was scheduled for Friday, October 28th, then changed to Thursday, then changed back to Friday. 🙂 It was scheduled for 5:30 PM on Friday, and when I got there Friday morning, they said they had an opening at 2:30PM, but right after I got there, the OR called up and said they had an opening soon (about 10:30AM.) So, Matt was prepped and sent down to the OR to have his stents removed, and got in there about 11:00AM. I got to see him again around 12:20PM.

The ENT doctors came and talked with me and said they are very pleased with Matt’s healing and that he looks great. The primary ENT doctor said that he is satisfied with everything regarding Matt, and has no reason to keep him in the hospital for ENT issues.

Matt will go through the swallow test again on Monday, and provided everything looks good with that, the goal is to get him eating from a bottle and moving forward in that respect.

We are about to head into the hospital with the kids, and will take some pictures to post later or tomorrow.

Things are looking good!

Matt’s stent removal date change

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Just a quick update on a date change.

The doctors have now scheduled Matt’s stent removal for this Thursday, October 27, 2011. Once that is done, they will perform another swallow test with him on Friday, October 28.

After that, the key things we are all looking for are:

  • Eating by mouth without trouble
  • Gaining weight appropriately
  • No respiratory distress

Once those goals are met several days in a row, he should be cleared to come home. Anything can happen in the coming days, of course, but those are the key goals.

With this in mind, provided everything goes well, he may be home by the first weekend in November, though the doctors haven’t given us any dates yet. We’ll just see how it goes.