Monday, September 21, 2009

August had been busy...

aAbove is a picture of Alyssa receiving a bolus feed for her Gastric Emptying Study. We decided to have this study performed because she began vomiting routinely after her feeds since having the G-tube. We opted for her not to have a Nissen fundoplication (This surgical procedure tightens the valve between the esophagus [canal connecting the mouth and stomach] and your baby’s stomach) when her G-tube was placed. Alyssa has mild to moderate reflux. Our hope: with proper medication management and flexible feeding rates we'll be able to better control her vomiting. We learned from the study that the rate in which Alyssa's stomach empties is within the normal range. Using this information we have made adjustments to how we feed (the rate, timing intervals etc.) Alyssa's vomiting is decreasing, I also think part of the vomiting is due to muscle weakness. There are times that a good sneeze /cough while going "poo" will bring on vomiting, to much pressure in the belly for her weak muscles to control or hold in all in. (???) It's a day to day battle. Alyssa eats some food by mouth, in which she tolerates well. Hopefully this will increase. Alyssa currently weights 17lbs and 13 ounces; she is 25 inches tall.

Alyssa saying "hello" to Dr. L prior to her MRI and CT scans. Dr. L an anesthesiologist was able to intubate Alyssa on he first go! Considering her small airway this was awesome. The less attempts means less trauma to her airway and less irritation after waking up. For her last sedation by another doctor, he made multiple attempts before deciding to go the way of a lighted fiber optic scope.

Sedation is a scary thing for us, when thinking of Alyssa's health concerns. Alyssa has had one other sedation experience and she did well, however we can't take that for granted. This time she recovered well too. My one major complaint was for the after care team. We felt as though they were rushing to get us on our way. In other words ready to send Alyssa home about 30-35 minutes after the scans, even though her respiration stats were all over the place. We had to stand our ground in waiting it out for Alyssa's respiration to return to her "normal". We use an apnea monitor and Pulse Ox machine for Alyssa, so we are aware of what her typical respiration patterns when awake and asleep, sick with a cold and well (w/T18). We know the settings, so when at the hospital her stats intermittently dipped and remained low then perked up~ they said something along the lines of oh you probably never noticed but she has slight apnea spells` don't worry, she recovers quickly...( but on at least 2 occasions it wasn't so quick). Our response "NO" Alyssa thankfully hasn't had a registered apnea episode since bringing her home last July, we know her normal and what was showing up after the studies was not it ( by the way her normal is the same for other babes her weight/size).

So she remained a little longer in recovery then typical and her stats became consistent. Could you imagine how tense/fear-filled our 1 hour drive home (longer w/traffic) would have been if we hadn't stood our ground? It sounds easy to do, but even for the most confident of people I don't think it always is; I'm just glad we were able to this time.

Below: Alyssa resting...slowly waking after the studies.
Alyssa was sent home on hospice care seven days after her birth. By three months her first hospice provider was ready to pull out because she was thriving. Also it was suggested by those reading her apnea reports to discontinue her apnea monitor because she hadn't had any episodes. Yes, this sounds great but imagine our frame of mind...most of her doctors were still predicting that she would soon pass; even her very supportive geneticist cautioned us saying that Alyssa wasn't yet "over the hump". Alyssa's geneticist strongly suggested that central apnea could occur at any moment and the chances of so didn't decrease until the one year mark. So we retained the apnea monitor with the support of her pediatrician and went with another hospice provider (that didn't frown on us working with Early Intervention as well). Now at 14 months old, Alyssa has been off hospice for five months. We still use the pulse ox and apnea monitor. Below: Alyssa during her sleep study.
Oh, what a night this was. She didn't seem to mind (much) the leads, wires or even the head wrap. She was a good sport until the nasal cannula! That was too much and she howled like I never heard her before. She got so worked up that she vomited and we had to redo all the dressings. Through the night she would rest well, then seemingly remember where she was and start crying all over again.
The sleep study was ordered by her Pulmonary doctor. Alyssa has a diaphragmatic eventration, snores a bit and again with T18 the apnea concerns the study would give us good information (hopefully). We are still awaiting results from the study.
One appointment we were able to cancel was to the pediatric dentist for the casting of infantile dentures. JUST JOKING!!! This is a running joke in our household as our kids teeth rather late. Alyssa takes 3rd place (out of 4) as her rice grains popped up by the end of her 13 months. Can you see them? Yes two teeth came up and her gums are swollen, so as with her older sibs' more teeth may come in quickly. You know, I wasn't sure if I was going to see our girl with a toothy smile. Even though they are just peeking through it is a welcomed milestone!!
Below: Dr. A holding Alyssa. He's meeting her for the 1st time since delivering her last July. Alyssa seemed to remember him. She was talking his ear off, I suppose updating him on what's been going on this last year? When taking the picture I think Dr. A obliged because he remembered delivering her but I don't think her fully remembered all the events of that night. Not until after putting her down (commenting how chunky she is) and taking a glimpse of her chart. His back turned to me, he did a quick half step and said something like ..ugh given her diagnosis this is something hugh? I just smiled and said "yeah." He then took another look at Alyssa smiled asked her age again and upon my response slowly shook his head side to side with a broad smile.
In addition to the above appointments: Alyssa had a repeat visit to the Cardiologist, an annual re-visit to confirm she is cleared cardiac wise. After a brief scare/miscommunication and a repeat echo; we know she does have an innocent heart murmur and is otherwise heart healthy. Dr. K. a surgeon was consulted for her diaphragm issues and she was given the all clear. At this time surgery is not needed. She was also seen in the seating clinic at CHOP, for a feeding chair, stroller and bath chair. She was re-evaluated by her eye doctor and Alyssa is scheduled for surgery. She will have her right eye strabismus correction. This was her strong eye, but after correcting her left eye; the right is not turning in. She was seen by her nutritionist too~ whom would like to see more weight gain ( we are trying). Alyssa still has stenotic (small) ear canals, so we are going to try hearing aides. We waited it out, as this was suggested back in May (?) but we know Alyssa can hear (she does have some loss per her ABR) and wanted to give her canals time to grow. Since they haven't and she is making sounds, is interested in the world around her we want to further encourage this so we will try the hearing aides. Wouldn't it be neat if the mix of the hearing aides and some speech therapy would increase Alyssa's verbal skills? Her ENT visit brought a close to Alyssa's August appointments; told ya' a busy August!

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