So I'm starting back up at March 21st... National Down Syndrome Day.
On Friday morning, March 21, the doctors put Beau on IV fluids around 4am with potential to extubate (take out breathing tube). His levels would determine ultimately if they would follow through. At 8:20am they put him on a CPAP trial, this is to see how his lungs are doing inhaling air with help, as opposed to the ventilator pushing air in for him. By 11am they were confident he was ready and Beau was EXTUBATED!! I was very worried so my prayers were flowing upward! Thankfully, Beau pulled through strong and his levels stayed stable throughout the day! Praise the Lord!! He is on high flow nasal cannula with a mix of oxygen and helium. The helium isn't the balloon kind that makes his voice sound like a chipmunk... it helps the oxygen he needs go directly to his lungs. The doctors explained it like a river. The water at the banks moves more slowly than the water in the current so in the same way, the helium pushes the oxygen "in the current" to the lungs more directly. Interesting right! Over the next few days they were able to wean down his flow on his oxygen and start back up his feeds.
Andrew's parents arrived in town that evening. Not only is this a special day to us (see previous post), but Andrew's parents got into Virginia and Papa got to meet his first grandson for the first time! We weren't able to hold him yet because he is still very sedated and on a lot of medications for withdrawl and anxiety.
The next few days it was a lot of watching Beau get back to himself. Andrew's parents were in town until the following Thursday so here are some photos that captured their time here. They got lots of snuggles and we enjoyed many nice family dinners out and an afternoon at the zoo.
March 21
We spent a few hours at the zoo so their whole trip wasn't spent at the hospital!
March 22 - Finally got to hold Beau for the first time since before he was intubated!
March 23 & 24
March 25
March 26 & 27
On March 26th, they did another swallow study and this time DID see that Beau was aspirating (milk was getting in his lungs). Though we were convinced of it due to all the retching hours after a feed, his first study (done at CHOP) did not show it so this confirmation was helpful. They tried him on thickened milk and he did not aspirate so they approved him to take formula, thickened with rice cereal, by mouth!
On March 27th, they did an Upper GI exam that showed all Beau's belly anatomy looked perfect and in working order! Praise God!!! The following day, March 28th, Beau had a sedated Direct Laryngeal Bronchosopy. This procedure was fairly routine and gave the doctors a good idea of what his airway looked like using a scope. His adnoids look normal (these can be trouble for kids with DS) so that's awesome! His epiglottis, aritnoids, and vocal cords are swollen. This could be because of the intubation/extubation twice and the positive human meta-pneumo virus that had taken over his airway. He also has laryngomalacia (softening of the larynx tissue) and tracheomylacia (soft and flexible windpipe instead of round and rigid.) Nothing overly concerning but definitely factors which are contributing to his ability to breathe unassisted.
March 28 March 29 March 30
March 31 April 1 April 2
By April 3rd, the doctors were tackling Beau's next challenge of feeding. He clearly was aspirating his reflux and struggling with a proper swallow, so the pediatric surgery team has gotten involved. They have decided the best course for Beau would be to get a g-tube to sufficiently provide him nutrition, get the NG tube out of his nose/off his face, and allow him to relearn how to take thickened milk by mouth again. The surgical team at the children's hospital would not put Beau under anesthesia for at least another 4-6 weeks due to the positive virus putting him at higher risk... so on April 4th, Beau was transported back to our home Naval hospital.
April 3 & 4
We spent the next week in the hospital figuring out a plan for Beau, began meeting with more specialists, and getting him back up to his full feeds through mostly ND tube. The final consensus is that Beau will need a g-tube so he can get the nutrition he needs that he isn't taking by bottle. Because of his reflux and retching, they also decided Beau will also need a Nissen Fundoplication (will explain farther down.) To get us from the beginning of April to the end of April when the surgery was scheduled, they put in an ND tube which goes down his nose, past his stomach into his duodenum. This will eliminate his ability to reflux since there is no milk collecting in his stomach. He will be fed continuously and will not be able to take anything by bottle to let his lungs fully heal and be as healthy as possible for surgery April 28th. So we were discharged on April 12th and Beau came home on a low amount of oxygen as well.
April 5, 6, 7
April 8 & 9
April 10th & 11th
April 12th - Beau got to meet the Easter Bunny before heading home!
Beau did great the next few weeks at home! He pulled at his ND tube
once at home, I pushed it back in and I rushed him to the ER as they
directed me. Thankfully, he only pulled it up a few inches and it was
still properly placed in his duodenum (they checked with xray) so we
were quickly on our way back home!
April 13 & 14
April 15 - Beau is 7 months old!! He is smiling more and more!
April 16, 17, & 18
April 19th and April 20th - Easter
April 21 April 22 April 23 - Beau and Sofia
April 24, 25, 26
On Sunday night, April 27th, we headed back to the hospital for pre-surgery prep so we were ready for the big surgery in the morning. Beau had four procedures done on April 28th. He had the gastic tube placed in his belly (the surgeon placed a feeding tube through the skin, stomach wall, and directly into the stomach.) He got a Nissen Fundoplication (the upper part of the stomach is wrapped around the lower part of the esophagus and stitched together to tighten the sphincter and eliminate his ability to reflux.) They did another laryngeal broncoscopy (airway scope) and checked/cleaned out his ears to check for pressure and fluid build up - he would put in ear tubes if this was present. All the procedures went very well!!! The ENT doctor did NOT see the trachiolylacia as before (woohoo!) and there was no pressure or build up in the ears - no tubes!!
April 27 April 28 - Surgery Day April 29
The next few days was recovery from surgery. The pulmonologist (lung doctor) talked to us about Beau's need for o2 and how he potentially had sleep apnea. This was also something they thought he had when originally in the hospital after birth. She wants to keep Beau on o2 and possibly do a sleep study this summer to confirm this.The pediatric surgeon advised the gtube not be used for 72 hours so Beau started using his new feeding tube on Thursday and his nose is now forever free from the dreded NG tube!!! He did really well tolerating his new feeds and we were discharged on Saturday, May 2nd, less than a week in the hospital!
April 30 May 1 - Started making kissy faces!
Beau has been a rockstar tolerating his gtube once he got used to his tummy being "played" with. It was more adjustment for Andrew and myself as we had to learn the ins and outs of this new feeding technique! Before each feed we have to "vent" his belly...burp for him... because the Nissen doesn't allow for him to do it himself. He gets three (one hour) feeds during the day and then is fed continuously overnight. And with a little bit of practice, we quickly became skilled at taking on and off his gtube extension... though Bethany still calls me a "Nooble Tubie"!! He is still on several medications and the oxygen too, all which have taken some getting used ...a new schedule and set of daily alarms to remind us of his needs!
May 2 - New Fav. Photo!! May 3 May 4
May 5, 6, 7
May 8, 9, 10
May 11 - My first Mother's Day
May 12, 13, 14
May 15 - 8 months old! His neck is getting very strong and we practice sitting up!
Beau gets PT once a week and she always says how strong he is getting!
Beau gets PT once a week and she always says how strong he is getting!
May 16, 17, 18
Mid May we had to get some blood work taken to test Beau's thyroid.
This is standard protocol for kids who have Down syndrome. Typically it
is done at 6 months but at that time he was intubated and then back in
the hospital three weeks after that discharge for g-tube surgery... so it was
at the back of my mind. Well, his TSH (Thyroid stimulating hormone)
came back high signifying that he has hypothyroidism. So we immediately
got him on thyroid stimulating medications. So thankful for our
pediatrician who keeps on top of his needs!!
May 19, 20, 21
May 25 and May 26 - Memorial Day
May 27 May 28 - Play date with Jennifer & Avery May 29
May 30 - Fun with Laura and Isaac May 31
On June 1st, Beau came down with a temp and he had high respirations and heart rate (my pulse-ox told me!) but I still hesitated on what to do. His heart rate resting is usually between 105-120 and it was 175-185 resting, hovering just shy of 200 when he was crying, which he did most of the day. :( I gave Beau some Tylenol and didn't see much improvement, temp was still fluctuating and respirations hadn't decreased. As a mom with a "sick" baby who was still on o2, I didn't want to overreact and rush him to the ER, but at the same time I didn't want to keep him home and risk a repeat cycle of Beau's last virus "outbreak" that landed him intubated for over week. :/ After getting counsel from his doctor, and some pressure from Andrew, I decided to take him to the ER. His temp was 102.8 and after getting blood work they saw elevated white count and BNP (a peptide that is secreted when the heart is excessively stretched.) He was admitted and given antibiotics. His fever broke later that evening and seemed to become himself again by the next day. On Monday morning, June 2nd, we had pre-scheduled appointments that we were still able to attend. Dr. A., Beau's cardiologist, said his heart was looking good and we don't have to come back to see her for 3 months! She told us the high BNP level has to do with the way his heart works now post surgery and is not anything to worry about. We also got to go to the aero-digestive clinic where the pulmonologist gave us the OK to slowly wean Beau off his oxygen while closely monitoring him. The ENT checked Beau's ears for an infection and cleaned them, no ear infection - yippee! The attending pediatrition kept Beau inpatient for a full 48 hours to make sure none of the labs came back positive, which they did not. On Tuesday he spiked another fever which they equated to this same virus so that evening everyone was comfortable with letting us take Beau home.
June 1, 2, 3
June 4 - Lil' Heart Slugger June 5 June 6 - beau's favorite toy!
June 7, 8, 9
June 10 June 11 - silly faces! June 12 - Carrots!!
June 13 - Big boy is sitting up, supporting himself with his straight arms!!! June 14
June 15 - 9 months big! Beau is 18 pounds, LOVES to smile!
He lights up when Daddy gets home from work.
He is rolling from side to side and supporting himself to sit for a few seconds.
He talks like crazy and is a wonderful sleeper, too!
June 15th - Father's Day
June 16, June 17 - Hanging with the Gumperts, June 18
On June 18th, we had an appointment with Endocrinology, our follow up from his positive TSH level blood work. We found out the thyroid medicine he takes is something he will be on for the rest of his life. :( The doctor was very informational... almost too informational that I wasn't able to even come home and explain to Andrew!
So now being home, we are learning to appreciate being able to take Beau out of the house to enjoy the sunshine even with an o2 tank and feeding pump in tow! :) We sport it with a smile as best we can, all the while hoping someday he will be cord free! We are now trying to work on Beaus' oral skills though he highly dislikes the bottle... REALLY dislikes!! We started giving him carrots just a few weeks ago and he doesn't mind the taste but the spoon is going to take some getting used to! It is more for experimentation and stimulation with different smells, tastes, and tools and hopefully will turn into real eating!
Though the challenges of the past 9 months have been more then we ever imagined we'd go through being parents, the month of March was a true test for Andrew and I watching our sweet babe in the state of intubation. It was so hard to look at (Becky and Mom can attest because they were here visiting). I would sit for hours by his bedside and pray, pray, pray. We continue to be so thankful for the Lord's provision and protection of Beau and our family. I follow another blog about a family who lost their little boy to brain cancer and her blog continues to touch my heart... these words from her sum up COMPLETELY how I have felt during these challenge in our life...
"It strengthened me, to be reminded of Whom I've chosen to put my trust. Where I've chosen to anchor my sail. It's a strong anchor. Through the years, I've been tossed and my sails have been torn. Most violently over the past few months. But through it all, the anchor has held... in spite of the storm. I don't know how people get through these big life transitions without being connected to the only Life Source that can sustain. That can comfort you during the dark times and remind you of the high purpose. I honestly don't know how they do it. I, personally, would have crumbled months ago if I hadn't been connected to the Strong Anchor. To be able to talk with, receive comfort from, and give me purpose for the future. ... But God....Emotions continue to vacillate. Emotions will continue to soar. But I choose to be reminded of my Anchor. Because he has always proved Himself to be capable. To be trusted. And more then able." - Mindy Sauer
Thank you again and again for partnering with our family in prayer for Beau. We are beyond appreciative for those of you who supported our family by purchasing "Life is BEAUtiful" t-shirts and donating to our family. I am continually reminded that God is paving a way and providing a way through people like you! He has gone before us on this journey and will continue to everyday in the future, walking alongside us all the way... in whichever way He takes us! We love you all dearly. We are so blessed.
We have this hope as an anchor for the soul, firm and secure. Hebrews 6.19
