Very Bad News

Well, Ryder has gotten sick. It went from OK, to bad, to worse very quickly. Friday we were told he was OK and just needing breathing treatments at home every 4 hours. By Monday he was not eating, had a fever, wheezing and just not active at all. So we went back to the pediatrician who then sent him by ambulance to North Arundel hospital. He was admitted there and overnight got worse. So they then had to transport him to UMD PICU. He has been intubated and put on a ventilator. He is fully sedated and on several medications with several IV's and tubes all over the place. We have been told that he has bad pneumonia in his left lung, it is completely non-functional so the vent is set pretty high and doing all of his breathing for him. They plan to keep him sedated for 2-3 days and then slowly try to wean him from the vent as the pneumonia gets better. They will take him out of sedation once he is off the ventilator. It might be about a total of 10 days in the PICU, could be more though. I will update when I have a chance....

Zak did have his circumcision on Monday and is doing well.

Long Update

So I have lots to write about this time...

Zak: Today Zak had his circumcision surgery. We left the house at 6am to go to the hospital for his 7:30am surgery. It was so early! He did great and loved the attention from the nurses. I carried him to the operating room and then held his hands while they put him under, then I kissed him and walked out to the waiting room. About 45 minutes later they came and got me to go to recovery with him. He was pretty upset, but calmed down once I held him and fed him a bottle. He was hungry and drank 12oz!! They gave him some pain meds and then moved us to the pre-discharge room (stay there for 30 minutes after leaving recovery to make sure your stats and tummy are doing good after sitting up and eating). Then a nurse held him while I got the car and we headed home. He has been good today at home, just a little cranky. We can give him Tylenol and Motrin for pain and have an ointment to use at each diaper change for 1 week. He has a follow-up appointment in 1 month.

Ryder: Well, Ryder did not have his surgery today. He got sick last week and we decided it was a good idea to cancel his surgery while he was not feeling well. On Friday he had high fevers and wheezing (just like the time at Easter). So Ben took him to the doctor and they said the same thing as last time, use Albuterol and Orapred. He has not gotten better, except the fevers are less and lower, and is now not drinking or eating. He just looks so miserable and not good. So Ben has his at the doctor right now, but our gut tells us he will end up in the hospital again for dehydration. I will update when I know more.

April's Newest Diagnosis

Well, this post isn't about the boys...it is about me. I have been having pretty bad back pain and stomach pain (around my belly button) since the boys were born. My OB had told me it would go away, but it just hasn't yet. So Ben convinced me to get an appointment with my regular doctor, so that is where I went this afternoon. She did her exam, talked about the pain and all. The final diagnosis...ventral hernia. This will require surgery to repair! So I have to schedule an appointment with a general surgeon now and see when it needs to be done and what the recovery will be like. I know that I won't be able to pick up the boys for the first 2 weeks at least so the timing for the surgery will have to be done around when Tracy (best friend) is out of school and back from her honeymoon or when my mom is in town for Tracy's wedding. Hopefully the surgeon will say it is OK to wait until then (July). I will update when I know more.

Ryder's Pediatrician Appointment

The last week Ryder has been soaking through his diaper, clothes and sheets every night! He has been wet head to toe every morning I go in to feed them. Then the last day or so he has started to do this during the day as well. The first thing that Ben and I both thought about was the possibility of Diabetes. I was so worried so we called and got him an appointment today. They weighed him (16lb 15.5oz!!) and then put on a collection bag to get a urine sample, saying that sometimes they have to send you home with it since the kids don't always pee while in the office. I know he would with the rate he had been going the past few days. About 5 minutes later the pediatrician came in and looked, half the bag was already full. So he took it off and had the nurse start running tests on it while he looked Ryder over. He said that Ryder looked and sounded healthy. A little while later he came back with the results of the urine tests....no sugar, no ketones, no infection, not concentrated. What a relief! So his only suggestions were to decrease the amount of formula Ryder was getting and increase his solid food intake. So we are going to take them both from 4- 8oz bottles and 2 solid feedings to 3- 8oz bottles and 3 solid feedings. Hopefully we will see less pee from Ryder with this.

If he continues peeing the same amount we will take him back to the pediatrician for more suggestions. The doctor also said it might get better once he has his surgery on April 28.

Zak's Final Diagnosis

Today we took Zak to see the pulmonologist. After looking through all of the tests and medications he has had she examined him. She then had him play with a rattle to see if getting active made his breathing any worse, which it did and he did wheeze a bit while there. So she said he definitely has asthma. He will be using a Flo-vent inhaler twice a day everyday as a maintenance drug which helps reduce inflammation of the airways. Then he will also have an Albuterol inhaler to use when he is wheezing badly, known as a flair up. After a while on the Flovent he should stop the chronic wheezing and only wheeze during a flair up. So we will document what causes flair ups so that we can try to avoid them. She said the 3 most common causes for fair ups are being around smoke/smokey places, illnesses, and excessive exercise. But there are all kinds of things it could be such as any kind of allergy.

Update on the Boys

Zak: He has not been wheezing for a bout a week now. But he is starting to cough and sneeze a little, hopefully it is nothing. He is getting so big now. He is now wearing 6-9 month clothes and size 3 diapers (size 4 is not too far off).

Ryder: Well, last time I wrote he was getting sick. We went back to the pediatrician on Friday and ended up in the hospital with him overnight. He came home on Saturday afternoon. To make a very long story short, he really didn't need to be in the hospital, but the pulse ox at the pediatrician read it incorrectly since it did not fit him so we ended up in the hospital. But with a perfectly fine pulse ox and all they did were the breathing treatments we can and had been doing at home. So we brought him home and he is now much better. He still has a head cold, but is eating great and happy. He is also growing, but not as big as Zak. He is wearing 3-6 month clothing and size 3 diapers.

Some upcoming dates of importance for us:
April 5: Ben & April's 1 Year Wedding Anniversary
April 8: April's 26th B-Day
April 21: The boys have an eye check-up with the doctor they saw in the NICU
April 28: The boys have their surgeries
June 8-15: We will be driving to Maine and New Hampshire to visit Ben's dad
July 15-22: My mom & Piper will be in town (for Tracy's wedding July 18)

Now Ryder is Sick

Last night Ryder did not sleep very well and this morning he sounded horrible. He was coughing, sneezing and wheezing! So we went to the pediatrician today. They said his lungs sounded bad so we did a breathing treatment in the office using Albuterol. After that he sounded so much better. So we were sent home with Albuterol to do every 4 hours for 5 days and then an oral steroid for the next 3 days. We go back on Saturday for a check-up to see how he is doing. They think he has a viral illness and possibly asthma. We are now trying to figure out if both boys have asthma which flairs up when ever they have an illness. Will update when we know more.

Zak's Swallow Test

Zak has his swallow study today at the hospital. They had him drink Pedialyte, formula, and then formula thickened with different amounts of rice. Then he ate some applesauce from a spoon also. They did not find any reflux or aspiration which is good. So that is one thing crossed off the list of possibilities. We will see the pulmonologist on April 1st and if she does not think it is his lungs we might have to do allergy testing. Although, today his wheezing is not bad at all. He has gotten over his viral illness and is back to himself. We think the wheezing got a lot worse from the virus and now it might not be as bad. We will see. The pediatrician told us we do not need to do the Pulmicort any more and we are waiting to hear if we still need to do the Prevacid since they didn't find any reflux today.

Ryder has not caught the virus that Zak had we think. He is now doing the coughing, gagging and crankiness. It is hard to keep those germs away from each other. We have taken Ryder off of the Zantac and he has been fine. It was a slow process of dropping a dose here and there. Then one day we realized he had not had it at all and was fine. So we will see if he continues to do well with out it.

With all of the medication changes we are now down to just giving the boys their fluoride once daily and nothing else.

Zak's Appointment Yesterday

Well, the pediatrician is still trying to figure out what is causing this chronic wheezing. He said we just have to keep trying different medications to see what shows improvement. So far this is what we know:

1) Zantac did not help (either means it is not reflux or the drug was not strong enough)
2) Xopenex did not help (possibly rules out asthma, but not completely)
3) fluoroscopy showed no abnormality in his trachea during breathing
4) now taking Prevacid to see if a stronger reflux drug will help
5) now using Pulmicort in the nebulizer to see if an inhaled steroid makes a difference which would help asthma
6) now using an oral steroid to see if this will show improvement (would help if it is asthma)
7) we have a swallow study scheduled for March 19 which will help show if there is reflux or if he is getting liquid into his lungs when eating/drinking

Another Update on Zak

Ben took Zak back to the pediatrician Sunday morning. The Xopenex nebulizer treatments were not working. The pediatrician decided to make a few changes to his medications and wants to see him back on Thursday. We have stopped the Zantac and started him on Prevacid which is a stronger acid reflux medication. We are now doing 2 nebulizer treatments daily using Pulmicort which is a steroid for asthma. Today Zak is coughing and gagging a lot worse, but the pediatrician said he is fine as long as he is happy, has no fever, and is not having trouble actually breathing. I will update after the appointment on Thursday.