During Theo's first week home from the hospital he did pretty well. He tolerated his formula feeds through the NG tube and even started eating prunes again. On November 12th, we went to see the Pediatrician. Theo was up 1.5 lbs from last week! Yay! He has been in very little pain over the last 5 days, so we are decreasing his Gabapentin dose. Double yay! The Pediatrician decided it would be a good idea to take out the NG tube today and see how Theo does over the next few days. If he starts eating agin then we can keep the tube out, but if he doesn’t they will put it back in and she will start talking to our doctors in Peoria about a G tube.
[Theo's Daily Schedule]
[He loves to feed himself]
[Playing with his light board and looking to the right]
[Braxton and Grammy Suzi looking at a picture of Theo]
[Theo's Food Journal]
[All the food we bought for Theo to try after he got his NG tube out]
[The Pediatrician encouraged us to give Theo eggs in any way that we can. So I hardboiled them and pureed them with some heavy whipping cream. And I also made scrambled eggs.]
[Sneaking eggs into his prunes]
Over the next few days Theo got better and better at eating baby foods, but he is terrified of his bottle and ANY liquids. We tried EVERYTHING: four different sippy cups, two different bottles, straws, spoons, etc. and every kind of juice, milk, and formula at all temperatures. Even our Feeding Therapist is out of ideas. They think he experienced too much trauma in the hospital and it doesn’t help that we have to force feed him all is medications orally with syringes multiple times a day. Even with all the food I was giving him, he was not able to maintain his weight and lost 1.5 lbs that week and dropped into the 5th percentile.
I called the Pediatrician Thursday morning (November 15th) after Theo woke up with a dry diaper. We went to the Pediatrician to get the NG tube replaced but they only had a short size 8 (he was released from the hospital with a long 6.5). After the doctor put the tube back in we went to the hospital to get an x-ray. The tube was about an inch too high so we had to push it down. After adjusting the NG tube, we were only left with a few inches to feed Theo and give him his meds. It was so hard and Theo kept turning his head and pulling at his tube while we were trying to feed him. Theo's acid reflux was also acting up really badly and he was having a hard time holding anything down.
[WAY too short!]
Friday, November 16:
Friday morning I called the Pediatrician and they told me to go to the ER in Peoria. They called ahead and told the ER doctors that we were coming and what to expect. They told us that we will be able to get a new (and longer) NG tube there (since they didn't have one at the little Ottawa hospital). They also informed a GI Specialist that we were coming and he agreed to meet with us and discuss a G Tube.
Theo and I arrived at the ER and were taken to a small room almost immediately. They did an x-ray and saw that the NG tube was in Theo's esophagus, which is why he was having acid reflux. They then took his blood sugar and started an IV. The ER doctor told me that she was going to keep him overnight due to him being dehydrated. While we were waiting for a room on the Pediatric Level, one of the doctors from Pediatrics came to see us. He was one of the doctors we had last time we were here, Dr. K, so he already knew Theo and I (and our situation) very well. We discussed the need for a G Tube and it was a great conversation. Dr K said he would talk to the Pediatric General Surgeon and the GI Specialist about getting the G tube. I told him we were willing to stay through the weekend if that would help expedite things.
[Napping on his right side]
At 8:15 PM we were finally moved to a room on the G Level. They gave Theo his meds and then started him on a continuous feed.
Saturday, November 17:
Theo continued to tolerate his continuous feeds well so they gradually increased the volume and turned off his IV, since he didn't need any extra fluids.
Dr. Yaseen, the GI Specialist, and a Dietitian came by and after discussing my concerns with them they both recommended that Theo get the G tube.
After Josh was done with work he drove down so I could go to a hotel and he could stay with Theo in the hospital.
Sunday, November 18:
In the morning Dr Yaseen stopped by again and said that Theo could start bolus (160 ml) feeds. Yay! He did very well and I had to stop the first feed with 7 mls left. Pain wise, Theo is doing VERY well and they are reducing his Gabapentin dose again tomorrow morning. So he should be completely off of it in a week. Yay! Theo still has a little stranger- danger, but it’s no where near as bad as last time. He gives the nurses the “side-eye” stare until they leave and he constantly watches the door to see who’s coming in.
At 2:30 AM they stopped Theo's feeds to he could be ready for his X-Ray Test the next morning.
Monday, November 19:
One of the Pediatric General Surgeon Residents came by to discuss the G tube. He said that the Pediatric General Surgeon, Dr. Robertson, had an opening on Wednesday, BUT he didn't think it was going to happen this close to our trip. The G tube needs six weeks to heal and if the tube comes out during that time you need a surgeon to put it back in.
At 7:30 AM the nurses took Theo and I to do an X-Ray test of his upper GI. They injected dye into his NG tube and then took a bunch of quick X-rays. The doctor said that Theo's anatomy is normal, but he did start refluxing because his tube is in his esophagus.
After we got back to Theo's room they pushed his NG tube in a little further so it was in his stomach, not his esophagus.
Theo started coughing and I was worried that he had caught a cold.
[Theo's PWS's show up really well when he is angry]
We waited all day for Dr. Robertson to show up but he was in surgery and wasn't able to come by. Dr. K told us that the G tube definitely wasn't going to happen before our trip so they would give Theo a new NG tube and send us home.
By the time they put in the new tube, x-rayed it, and fed Theo again, it was 10:45 PM. Dr K told us we could stay another night, but I was ready to go home.
Tuesday, November 20:
We got home at 1:00 AM last night, but it was worth it to have Theo get a good nights sleep.
Dr Robertson called me and we were able to talk for a while about Theo and the G tube. We decided that I would bring Theo in to see Dr Robertson on December 6th (the day before we leave on our trip) and the doctor would give him a bridled NG tube. Then when we get back in January we will go back and see him and the GI Specialist to discuss getting a G tube then. I was so happy that he called and was willing to work with us!
On Wednesday (November 21st), Theo's cough got worse and started to sound very croup-like. I took him to the Pediatrician and he said he does have croup. Bummer. He prescribed a steroid and told us to come back on Monday for a check up.
[I hate our pantry. The cupboards are thin, tall, and deep. So I sent Josh to IKEA to get some small shelves.]
[It looks so much better now!]
[Here kid, hold your own bucket]
[Still a pro at putting his Paci back in]
Thanksgiving, November 22:
In the morning we were able to FaceTime with Jessi, Ally, and baby Braxton! It was so fun to see their faces!
Before Theo and I went to the hospital I ordered Thanksgiving pies from our favorite bakery in Indiana and a Thanksgiving dinner from Cracker Barrel. I had NO desire to make a Thanksgiving dinner for two people in our tiny kitchen, so I thought this would be the best plan. AND I WAS RIGHT!
Josh drove 90 minutes to Indiana to get the pies (chocolate silk, apple crumb, and strawberry rhubarb), and then drove 90 minutes back to Cracker Barrel to pick up our dinner, and then drove 20 minutes home. The food was delicious, especially the pies, and the best part was clean up was done in a matter of minutes! We got so much food that we ate Thanksgiving lunch and dinner for two days!
[Watching the Parade]
[Star Wars humor!]
During the next week we went to various appointments and therapy sessions. Theo is feeling and doing so much better! He is smiling and interacting more, and is starting to use his left hand more (he's always been very right side dominant).
[Josh's co-workers gave Theo some presents! A Packers snowsuit, a Packers beanie, a Packers blanket, and a Viking beanie. The coworker is a Vikings fan, but knows Josh is a die-hard Packers fan.]
[The night of November 25th we got our first major blizzard. The power was out most of the day and it was FREEZING! Luckily, we have a generator that we were able to run all day to keep us warm]
[We got this snowsuit for Theo for our trip to SA. I don't know if he will really need it, but we need to be prepared!]
[Theo hasn't eaten any food by mouth since he got the size 8 NG tube in. We keep trying various foods, but nothing works. We even tried whipped cream and he wasn't into it!]
November 30th:
Theo and I had a long day at the hospital! First we saw Dr. Maheshwari a GI Specialist. We talked about Theo’s eating habits (or lack there of) and she says he definitely needs a G tube. He’s been sick this week so of course he lost a few ounces, but for Theo that’s a big deal. I told her Theo was on a 30 calorie/ounce formula called EleCare Jr. She asked me if Insurance was covering it and I said “No.” She immediately left the room and came back with EIGHT cans of formula (worth $45 each). She said to call my insurance right now and ask them to start covering Theo’s formula and if they push back Dr Maheshwari would write a letter on our behalf. For those of you doing the calculations, if Insurance covers his formula that’ll save us $540 a month!
Next we saw Dr Avula with Neurology. He’s concerned with Theo’s lack of head control (aren’t we all), but he was happily surprised when Theo reached UP for one of his toys. We discussed Theo’s meds and he said he will be on them for six months and then, if Theo shows no signs of seizures, we can start to wean him off of them. He’s ordered an EEG (awake and sleep), but said if we can’t get it done in the next week we can wait until January. Since Theo isn’t showing any signs of seizures Dr Avula isn’t too worried about having it done right now. We also talked about the seizure that Theo had in the hospital right before his EVD. Dr. Avula said if could have been from the low sodium levels in Theo's blood or the blood in his ventricles.
Next we headed over to see my favorite team, IR. We spent a lot of time talking to Jessica about Theo’s development and she was very happy with what she saw (but was also concerned with the lack of head control). She listened to Theo’s fontanelle and could not hear the bruit, which means the coils are holding and the Vein of Galen is still plugged! Yay! We will see IR in one year for a follow up angiogram.
FINALLY, we went and saw Dr Lin with Neurosurgery. He did a quick exam, asked a few questions, ripped Theo’s EVD scab off (funny and a bit traumatizing at the same time), and then said that we will do a CT scan on Theo to check on the VP shunt while we are in the hospital in January (when Theo will be getting his G Tube). Neurosurgery and IR will be taking a backseat while Neurology and GI take over Theo’s care. Of course there are still concerns (eating, physical and developmental delays), but the doctors seem very optimistic and we will continue to work hard!
[Money for the SA Trip]
December 2nd:
Theo started coughing really badly during the night, but he took his morning formula well, so I decided to give him an ounce of puree egg yolks (with water). He held it down for an hour but then he threw it all up. UGH! He starts coughing (from the croup), and then it turns into gagging (likely due to the NG tube), and then he freaks out and throws up. This process escalades and Theo ends up throwing up EVERYTHING in his system. It's so heartbreaking! We ended up calling the Pediatrician (yes, on a Sunday), and the APN sent a prescription to the pharmacy for us and told us to come by the office (they were closed) and she would meet us there to give us a nebulizer.
**Side note: Have I mentioned how great out Pediatrician is?! Seriously! We have the Pediatricians work, cell, and house number AND the APNs cell number too. They will answer your call at anytime of the day or night.
Josh went to the Pediatricians office to get the nebulizer and then ran to the pharmacy to get the medication for it. Theo HATES the treatments, but they only last six minutes so it's not too bad.
December 1st:
Today we had a rainy family day out! We needed to pick up a few things before the trip and Josh's last day of work was today so we went out to celebrate!
We went to Costco, REI, Verizon, and the Mall. We purchased some fun things for the trip including a new backpack for me, pants for Josh and I, and a warm blanket for Theo. I also decided to upgrade my OLD iPhone 6 Plus to an iPhone XS MAX. It's super cool! I got the 64 GB model, but that is four times more gigs then my last phone so I'm happy with it!
After shopping we went to White Chocolate Grill to get an early dinner.
Theo was so great all day! We were able to feed him without any problems in his carseat or stroller and he didn't throw up all day. Yay!
During the rest of the week we went to PT, I stressed about our up coming trip, Josh got the oil changed in my car, I stressed about our up coming trip, Theo had another check up with the Pediatrician (Theo is up to 20 lbs 10 oz! YAY! That's over a pound in six days!), I stressed about our up coming trip, Theo had vision therapy, I stressed about our up coming trip, AND Theo got his bridled NG tube.
[Another present from one of Josh's coworkers]
On Thursday, December 6th, Josh, Theo, and I drove down to Peoria to meet with Dr. Robertson, the Pediatric General Surgeon. We talked about the bridled NG tube, our upcoming trip, and the G tube. He brought in a baby doll and showed us how to use the G tube "button." I felt very comfortable with it so we scheduled surgery for January 14th. After talking with Dr. Robertson, a nurse came in and put in the bridled NG tube. Theo SCREAMED! I mean SCREAMED! He threw a HUGE fit and we had a hard time calming him down. The poor kid had a tube taken out of his throat and then TWO appliances shoved up his nose, and THEN another tube put down his throat. Once we got him calmed down we went and got an x-ray to make sure the tube was in the right spot. It wasn't. So, the nurse came back and pulled it out a bit and reset the bridle. We then fed Theo to make sure everything was fine before leaving the hospital.
On Friday, December 7th, we packed our bags, the vision therapist came to see Theo, and then we all jumped in the car and drove to Josh's coworkers house so they could give us a ride to the hotel by the airport. Do you know how expensive it is to park your car at the airport for a month? Even to park it off site is crazy expensive!
That night we stayed at the hotel and then got up SUPER early to catch our flight to Lima (with a layover in Miami).
It's been such a busy month, but Theo has improved so much. He is rolling over again and playing really well with his toys. When he sits in his feeder seat he tries really hard to lift his head to center line. I can't wait to see how much you improve in the next month!
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