Monday, February 7, 2011

Luke's (breathing) story - post trach part 1

So here is more of Luke's story. I know it may not be grammatically correct but mom feel free to let me know and I can change things. I just wanted to get it out there.

Luke had his trach put in on February 23, 2009 at about three weeks of age. The night and day after his surgery he would stop breathing and turn blue and have to be brought back with an ambu bag. This happened a lot in a short period of time the day after the surgery in the afternoon. I finally figured out, after talking it through with the nurses, that it was probably the Versed which they were giving him to keep him still so he wouldn't knock anything lose. They gave him a dose just before the many episodes happened the afternoon after the surgery. They halved the last dose they gave him that evening and things got better. Luke has on his record now that Versed is something he is allergic to because I don't want to see my baby blue again. I remember not liking to see Luke turn blue and ambu bagged back but I don't remember being really super upset about it. I look back and notice a lot of things now that didn't rile me like I would have expected but I think it was God knowing we had a long journey ahead and to take things in stride. This is unusual for me so God was working pretty well with me through this. Oh I cried a lot through it all and had my breakdown moments but they were usually after the fact back in my room when I had time to think about things more.

A good thing was that we were seeing a lot of Luke's face which was really nice. The only tube he had now on his face was the feeding tube, which he learned to pull out very well in the next couple of weeks before his g-tube surgery. Luke also learned how to pull off his vent tubes just a couple of hours after surgery and could manage to get them off right in front of my eyes while I thought I was holding his hand and keeping things under control. Luke does have a personality and he seemed to be saying that he did NOT like this trach vent thing and they needed to go.

They started feeding him breastmilk again the day after surgery and by the 2nd day after surgery he was back to his pre-surgery level of feedings. Luke has always been a great digester, I won't say eater because he doesn't “eat” things by mouth. The 2nd day after surgery went much better all the way around for Luke as he was more himself, had no blue episodes and was moving all limbs around. I did get to hold him for his afternoon feeding which was awesome since I wasn't allowed to hold and cuddle him much as they were afraid that his trach would fall out. And my holdings were only for feedings and very supervised. They were nervous about us holding him because the trach can come out and since the tissue has not healed to accommodate the trach things could get bad and more surgery could be needed. There were two strings that were attached, I never did grasp exactly how, to pull things open and stable in case the trach did come out. Luke did loose one of the strings before the week was up. At a week the ENT comes to do the first trach change and make sure everything is okay.

So the thought was that once the trach was put in that Luke would be able to breathe unassisted. It seems that usually trachs are put in because of some issues with the airways and since our ENT didn't think he had any issues with his airways we didn't know what to expect but were hoping for the best and to be vent and CPAP free soon after the surgery. The 3rd day out of surgery Luke tried CPAP and couldn't handle it so was put back on low vent settings (I don't remember what they were).

He also did a little spitting up so they decreased his feeds a little bit. I don't remember this but read it in my notes. I knew we were looking at a g-tube when he recovered from the trach surgery and don't really remember any feeding issues before that.

Luke was breathing short shallow breaths and fast if I remember correctly which is not so good. Slower deep breaths are the preferable way to breathe. Five days out of surgery Luke was on CPAP all day and breathing a little fast but holding his own. His trach stoma site was a little redder than it had been and the nurses said they would point it out the the ENT in the morning when he came.

So about a week after the trach surgery when I got to the NICU in the morning Luke was back on the vent and on antibiotics for an infection. A culture was out to the lab to see what the infection was. This was very disappointing and I was hoping for a fast recovery and back to CPAP and hopefully lower. However, little did I know, Luke would not be coming off the vent before going home and now, at 2 years old he is still on the vent at night and naps.

The culture turned out to be staff and they were already treating with the correct antibiotics so that was good. The antibiotics kicked in and Luke's vent settings were turned down twice in one day!

Luke first trach change went well and the ENT through things were going fine. They kept the trach size at 4.0 since Luke was on the vent. The ENT said a smaller trach could have leakage and then the vent would alarm unnecessarily and not be delivering its air efficiently. At this point we started things in motion for getting trained on all the care needed for a trach baby. I was now back to holding Luke whenever I wanted, which was mainly during feedings which was great.

And a new issue, high blood pressure. Luke has had high blood pressure it seems like always. The nurses comment on it but the doctors don't seem to concerned. The new resident mentioned it to the doctor and they ordered a kidney ultrasound for the next day. From what I gather, kidneys not functioning correctly can cause high blood pressure and they may not be functioning correctly due to the UVC line that was in his belly button when he was first born because they could not get an IV. The ultrasound didn't reveal any abnormalities in the kidneys so his high blood pressure was still a little bit of a mystery although they were still thinking the UVC line might have caused some damage afflicting the blood pressure.

So this turned out to be a busy day with the ENT and first trach change, high blood pressure issues, and the eye doctor. The pediatric eye doctor said Luke's eyes still had scratches but looked good enough to take him off his antibiotic for his eyes. Yeah!

A little over a week after trach surgery and after recovering a bit from a staff infection Luke started 3 hour trials on CPAP. He did well for most of his first few but started going downhill towards the end of them. It is a step in the right direction though.

Luke went for an upper GI to proceed the putting in of a g-tube the next day. Which is good because he took his feeding tube out twice during our trip to get the GI done. The upper GI revealed some aspiration and so the docs decided to do a Nissen Fundoplication as well. The Nissen keeps food from going up from Luke's stomach into his mouth and then down his airways. There is a lot of controversy around getting these done. I had no idea of the controversy at the time but Luke's seems to have turned out well and so far we have had no problems with it. I mentioned Luke's grabby hands to the surgeon and since Luke was a good sized baby he said he could put a button in right away and not a tube that hangs out. This was great new for me as I foresaw a lot less problems. Luke was also going to get a muscle biopsy done to rule out muscular dystrophy.

Around this time I had some down times about not being able to hold and cuddle my baby as much and a little about Luke's future. I didn't and still don't like to suction him and back then he really didn't like it. He has learned to deal somewhat now. I would rather be the one than some nurse that didn't care as much as I did though. What I didn't like is that with all the tubes and stuff it wasn't easy just to scoop Luke up and cuddle him when he cries. I do enjoy the ability to just scoop him up now and give him a good cuddle.

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