Reset?

It has been a rough week around the Miller household. If I was able to press a reset button, I may have done so.

John had an appointment with the Cardiologist last Thursday. He weighed 10lbs 10oz. The appointment was just a follow up from the echo that was performed in the hospital. We’ll have a follow up appointment in on January 8th.

John has back pedaled a little in eating. We have been having to use the g-button a little more. This could be due to him not feeling well too. Dr. Meyer, his pediatrician,  believes he has an upper respiratory infection. He”s been on antibiotics since Tuesday. He also weighed 10lbs 8oz at the doctor that day. The weight loss could have been a result from John vomiting his feeds. He has a nasty wet sounding cough that tends to cause his milk to come up sometimes from coughing so hard and so much.

 

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Joseph and Alexander started swimming lessons this week. They’re both learning so much and seem to be really enjoying it. I am in Joseph’s class since it is a “Frog and Parent” class (that’s the name). Joseph is catching on really fast and learning, but he’s also scared to get his head wet. I believe it has to do with his ears since he recently busted his eardrum last Thursday. Alexander is in the “Minnow” class. He also seems to be catching on really fast and learning.

 

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One blessing that God has sent our way is my mother. She is an RN, and will be coming to live with us on the 28th to help take care of John as our home health nurse.  I am also the boys will enjoy having her around too.

That’s it for this week.

-Jacqueline-

jacqueline@millershewrote.com

Phil 4:13 I can do all things through Christ who gives me strength.

4th of July

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I hope everyone had a great 4th of July.
John slept through fireworks unfortunately.

Hopefully next year he will be awake and enjoy it. Thomas, Alexander, and Joseph watched the fireworks at the George Bush library from the front of the apartment. We normally go.

John has been battling a little cold or something so we have been giving him breathing treatments and antibiotics. He weighed 10lbs 20z as of July 3rd at the doctor.

Next week we see the cardiologist for a follow up from his heart echo that was performed in the hospital back in May.

Alexander and Joseph start swimming lessons on the 15th. Both boys are really excited to learn how to swim.

That’s it for this week.

-Jacqueline
jacqueline@millershewrote.com

4 Months

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It’s been four months, but seems like only yesterday when John was born.

2/23/14 (Sunday)

Thomas, Alexander, Joseph, and I had woke up to attend church. I was having contractions but at the same time I had been having them for a while with not enough dilatation to be admitted to the hospital. We went to church and I sat during most of the singing songs part of the service because I was having to focus a bit more through them.

I texted my friend Monica, who we made prior arrangements with asking if she could watch the boys. She said she would be home in about an hour later after we got out of church. I started drinking a lot of water hoping the hospital wouldn’t make me drink anymore  when I arrived to try to stop the contractions. Every time I’d go to the hospital previously it would turn out to be false labor. Also at the same time Thomas & I were getting everything ready to have the boys spend the night at Monica’s in case I was admitted.

Alexander was a little disappointed thinking he was not going to get his meatloaf he requested for his birthday dinner (I make whatever is requested by the birthday person for dinner.) I did inform him that Monica would be able to make it since I had pre-made his birthday cake the night before as well as mixed the meatloaf that morning hoping to be able to cook it when we got him. He was happy then as well as happy with the thought of sharing his birthday with his little brother or sister. (For those who don’t remember we did not know if we were having a boy or girl since I really wanted to be surprised).

When we arrived at the hospital I had to go through pre-admission since I had yet to be able to fill out everything. I guess they wanted to cover all their bases in case it was true labor and I wouldn’t be having to fill out forms while they were trying to admit me. I was at a 3 when I was checked at Labor & Delivery triage. The nurses said they would check again in an hour. 45 mins later they checked my progress only to have me at 4 1/2. So obviously I was being admitted. It was around 7p. At 9:56p John was born weighing 7lbs 20z & was 20in long.

Fast forward four months later…I would never have suspected the road that we have traveled with him would of been anything like it has been, and it has been quite a travel with everything that has happened.

On to the news:

4 month check up:

He weighs 9lbs 15oz and is 23.75in long as of Tuesday, 6/24. John’s Pediatrician would like for us to change his feeds a little. Hopefully lessen the amount of time he is on the pump during the day, but still get the amount of food if not increased hopefully that he currently receives. Right now his feeds are at 9, 12, 3, 6: He receives 40-45mls via mouth in 10 mins & 45mls via button over 2hrs. 8p-8a: continuous feeds at 25mls/hr. We are trying to switch to 40-45mls via mouth in 10 mins & 40 mls via button over 1 1/2 hrs. 8p-8a: continuous feeds 30mls/hr. Also Doctor would like for us to have ECI or at least some sort of physical therapy with John starting soon because of his muscle tone still being weak.

John came home after his 4 month check up only to have me place him in the crib and realize his g-button had came out. (Insert me freaking out a little trying to get it back in as soon as possible.) A few moments later to discover that the balloon that held it in place had been busted. I managed to get a temporary one in and then Thomas, Joseph, John and I drove to Temple to have it examined and the button replaced.

We get to Scott & White McLane Children’s Clinic to have Dr. Little look at it. One of the residents replaces it with a better tube (since I had used the temporary foley that was given to us in case we were unable to get the g-button back in). They also had us go next door to the hospital for an X-Ray to make sure everything was where it needed to be. During the first 4 months of a g-tube surgery they’re a bit more concerned since items are still healing. All was well.

Sleep Study update:

We are still working on getting this scheduled.

Texas Children’s in Houston:

I received a call from Dr. Blazo (Genetics) letting us know a hospital in Houston is interested in examining John to hopefully learn more about Catel-Manzke Syndrome. Now I am just waiting for a call back.

Home Health:

We’ve found a temporary nurse. She’s a school nurse and can help until school resumes. We’re still hoping and praying we find a full-time nurse as soon as we can. If anyone knows of anyone looking for something please let us know and we can forward their information on to the home health agency, Angels of Care,  for review. Basically a CNA, LVN, or RN certification are the prerequisites, but it’ll be at the final discretion of the agency.

-Jacqueline
jacqueline@millershewrote.com

Catel-Manzke

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Monday, June 16th, 2014

John had an appointment with his GI doctor. He weighed 9 lbs 9oz. The doctor is pleased with his weight gain and that he’s tolerating feeds by mouth as well as via the g-button. The doctor said he wishes for himself and John’s pediatrician be the ones to change his feeds. Just so there aren’t too many hands in the pot. Also, we have increased John’s reflux meds (Prevacid) from 1ml to 1.3mls. We’ll have a follow-up appointment in about a month.

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Wednesday, June 18th, 2014

Thomas & I drove to Temple and we were able to knock out three appointments in one day.

ENT:

John weighed 9lbs 14.4oz, with diaper and clothing.

The doctor changed his steroid drops from 1 drop a day to 1 drop twice a day. The doctor doesn’t see a reason to repeat his larynx surgery.

His doctor did notice that his palate is soft. The tissues and muscles that are in the roof of his mouth meet has more of a line instead of being intertwined. That could be something, or nothing at all to worry about.

John’s breathing is not horrible, but could be better. The doctor agrees that he was using his chest muscles a little more than when he left the hospital. He thinks we may need to consider a CPAP (the nasal kind) since we have noticed him skipping breaths, but that depends on how the sleep study goes. Also we’re still not ruling out the possibility of a tracheotomy. At the same time his doctor doesn’t think we’ll need it. Basically the sleep study will tell us how much assistance he’ll need.

We’re also going to Children’s Medical Center in Dallas for his sleep study because Texas Children’s in Houston has an extremely long waiting list. We’re scheduled to follow up in a month. We’re hoping John’s sleep study results will be available by then.

Surgeons:
Once a month we’ll need to check the water in his g-button balloon. This is what holds his g-button in place. It should be at 3mls. If it isn’t we’ll need to add more water. We were also shown how to put the tube back in if it falls out.
There is some redness around the tube. According to the doctor, it’s called “granulation tissue”. His doctor applied “silver” to help with the healing. Fortunately, it’s also something his pediatrician can apply if needed.
He’ll be given a new button about every 4-6 months as he grows. We just hope insurance agrees.
Genetics:
His tests from the hospital came back normal. His genetics doctor strongly believes he may have Catel-Manzke syndrome. The suggestion came randomly from our lactation consultant who at one time studied genetics. It’s a very rare syndrome. It’s rare enough where only 26 (now possibly 27) people have been diagnosed with the syndrome.Here are a few links:
All of his features seem to point to Catel-Manzke. The only problem is there really isn’t a test for it yet. She has forwarded John’s results to Texas Children’s in Houston and has yet to hear anything back. She did ask if we’d be ok if they were to contact us for further testing, more so to help learn about the condition. We agreed. Fortunately the syndrome has not been known to affect mental capacity.
The “beaking” in the vertebrae simply means the vertebrae’s are curved slightly vs. being in more of the square shape they typically appear as. She would like for us to follow up in a year with another full skeletal x-ray to compare to the one he had in the hospital.
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There is still a possibility he may have cerebral palsy on top of the syndrome, but it’s still too soon to tell. We’ll know more as he ages.
Thursday, June 19th, 2014
Home Health called to let us know we had been approved for 65hrs/wk. Now the search is on for a nurse. Basically it is a waiting game until we find one. We do have the option of suggesting a nurse if we find someone with the qualifications.
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Finally, we visited family this past weekend, June 13th- 15th, and this is what you get when you try to take 2- 2 yr olds, a 10 yr old, a 3 month old, and a 3 yr old’s picture together.
That’s about it.
Email me if you have any questions.
-Jacqueline

Life Loop

Life has been a continuous loop of pumping milk, fortifying it with formula, feeding, adjusting his feeding pump, doctors appointments, playing catch up and keeping Joseph entertained. It keeps me from updating as often as I’d like. Here’s what’s new: Sleep Study: His referral has been sent to Texas Children’s Hospital in Houston. Now we are just … Read more

Life after the hospital…

So far after an almost month long hospital stay (was just 2 days shy of being a month). We’ve had two follow-up doctor’s appointments with 5 more scheduled for the remainder of the month with possible more. On Monday I noticed “leaking” from his belly button from where the pediatric surgeons made his incision for the g-button. … Read more