27 Feb 2014
Well, Abram is wonderful. He keeps getting cuter. He pretty much eats and sleeps like he should. He clears medical checks so it appears we have a healthy child. That's certainly a relief.
Rokus is getting better. We take him to CHO tomorrow for another throat dilation. The nephrologist will also check him out. He is so happy and active. He just started getting comfortable with messy things now. Things like mud, dirty rocks, gross water, smashed bananas, and the sort. Before he always wanted his hands cleaned right when they got a little messy. He is so active he ears and tears on his ostomy bag. The ostomy bags need replacing almost every day now. If we don't pay attention, they fall off during his sleep and we end up with a disgusting ostomy bag bomb all over the place. Sometimes we have to give him a bath and put a new bag on in the middle of the night. We have established a good medicine schedule for all the meds. They are given at 5am, 1pm, and 9pm daily. Epogen shots are given on Monday, Wednesday, and Friday. Waking up at 5am seems to be good for both of us. He sleeps through it and I wake up early. The early start gives me alone time to think clearly. Overall, Rokus is doing much better. We had a scare last Sunday because his body was swollen. We think it was from eating pizza the day before and perhaps there was too much sodium for him. That kind of stuff stinks. In fact, I went on a Dive Team callout that day. I wasn't sure if I should go, but Steph said he'd be okay. And he was. We are happy for Rokie and glad he's home.
Steph is doing a great job, and I am really glad she is raising my kids. Both Olivia and Rokie have a hard time keeping off Abram, but that's a good problem to have.
Steph and I are putting together a FOOD SAFETY AWARENESS Fundraiser. We've got some great local support and things are moving along very well. We are so excited. There will be a lot of information to share and food to be eaten. More later. Life is good.
17 Feb 2014
Abram Wade Patterson was born yesterday night in our home at 10:44 pm. He was 8lbs 4 oz and just under 20 inches. The midwives believed he was about 37 weeks based on lines in his feet and something about his ears. Originally we thought the due date was Feb 22 but the midwives had reason to believe it was perhaps at the first or second week of March. Doesn't matter either way. We have a new baby boy!
We got the kids to bed around 8:30 or 9:00 pm. Stephanie had some cramping during the day and she just laid on the couch listening to home school talks. She thought the cramps were Braxton Hicks cramps but around 9:00 pm, the stronger contractions set in at 40 second durations and 3 minutes apart. Midwives made their way over. 10:15 pm Stephanie was liated 9 cm. We fumbled with the temperature of the tub. At 10:44pm we invited our boy into life with our family. Steph thought all along the baby would be a girl and we had agreed on a name Ellie Ruth, but Abram surprised us.
We had been working on names for a while. Ellie Ruth was done and agreed on for a girl. The boy name was not set in stone. We basically got down to a combination of Wade, Abram, and Jens. Wade because of my best friend Dylan Wade. Jens from Jens Jorgesen, an ancestor pioneer from my dad's side, who prayed the Lord would protect his crippled old body as a buffalo herd ran towards him. As the buffalo came upon him, the herd parted around. Other pioneers came back to collect his body and bury it when they saw the buffalo stampede but they found he survived thanks to the Lord. Abram is from Rokus de Groot's older brother. Menny said Abram and Rokus were the two silent, kind, powerful brothers. They called Abram "Bram" (Brahm). For the last week Stephanie and I were set on Wade as the first name with either Jens or Abram for the middle name. When I held our boy for the first time, I felt strongly his name was Abram Wade Patterson. After about one day of deliberating, Stephanie and I agreed on Abram. What a great boy.
He hardly cried after birth. Only cried once and then was silent. He whimpers slightly. He doesn't like getting a diaper change, but I figure crying about that is certainly justified.
Olivia and Rokus love Abram. Rokie is very gentle and inquisitive. Olivia wants to take care of him constantly, always wants to touch his face and hands, and gets a little clumsy playing close to him. I love how they both want to be with Abram. Olivia wants 16 more babies. She is so awesome. Someday I would not be surprised if she runs a daycare. Rlkus is gentle around Abram because, I believe, he was handled so much in the hospital that he knows how to act or treat other fragile people.
Although this is a new added challenge in our busy and hectic family life, I still believe the blessings outweigh the struggles. Our family is amazing. I love my wife. Now we have to work hard and sleep little to keep our kids alive. Waiting for a break. We love our family and thank Heavenly Father daily for these opportunities.
6 Feb 2014
Rokus is doing well and just healing at home. I think the ostomy smell is disgusting but I am getting used to it. He is a happy boy and we feel totally blessed.
4 Feb 2014
So, Rokus is just such a happy kid. While being home he has just been healing and getting back to normal. He runs, plays, tackles, teases, loves, hugs, laughs, and smiles like he used to. There are some things he doesn't like such as emptying his ostomy bag, replacing his ostomy bog on his skin, and getting his Epogen shots. He seems to be developing fine mentally, which is a big relief. We wondered if he would have brain damage or delays but he doesn't appear to show any signs. He is trying to talk more and more everyday. He tries climbing up and down everything despite having a feeding tube or ostomy bag dangling in the way all the time. He is a very patient two-year-old. He knows when he's hooked to his feeding pump so he stays by his pole or keeps his backpack on all the time. It is just a part of his life and he just accepts it. When I come home, he is always the first to run in and greet me.
I am so thankful to have Rokus back. He is my miracle boy. Love it.
28 Jan 2014
It is Rokie's birthday today. So nice to have him become an official 2 year old. He is so much happier now. He has an excitement for life. He loves playing with Olivia. They chase each other around the house all the time and the giggling is contagious. I love my kids being happy.
I walked in the door last night and I heard Rokus yell my name and come and give me a huge hug on my leg. He is really beginning to look and act like the real boy he was before getting sick. It is really uplifting.
22 Jan 2014
It feels like life is returning somewhat back to normal for two consecutive days. That's good.
I talked with the doctor today and she said Rokie's blood pressure readings looked good - so much so that we no longer need three reading each day. It is now down to one BP reading each day.
21 Jan 2014
Olivia has been great for Rokus. She jumps, wiggles, hugs, dances, runs, and everything else with Rokus. He is constantly following her and is more adventurous at home than at the hospital. His latest surgery scar is still trying to heal and his stomach muscles are still trying to develop. The way he walks and moves indicates he does not have all his muscles back. His right foot is turned out when he walks and sometimes he holds his hands funny. But, he is a very happy boy most of the time and has begun learning how to just deal with the feeding tube, the feeding pump backpack, and his ostomy bag. He doesn't like it but he deals with it. Stephanie and I have become his nurses and can do everything except draw blood for lab work. I am getting pretty good at pediatric blood pressure readings.
Mema and G. Booty have been huge helpers for our family and we are grateful to them. They have helped us maintain our home and continue to do so. They also take care of the kids to allow Stephanie and I to transition back into "normal" living. They are great.
15 Jan 2014
Yesterday Rokus came home. He got home late at night and it took some time to figure out how to set up his supplies, administer medicines, and prep him for feeding with the new feed pump and supplies.
When he got home it was cute to watch his brain working. You could tell he remembered home but a lot of things had changed. Toys were different, furniture was re-arranged, and the master bedroom was remodeled. He spent lots of time walking around, exploring each room and just getting used to his surroundings again. He was so excited and smiling. He jumped on the bed with Olivia even. Being home, he instantly is moving more, talking more, and just seems much happier.
He wears a little feeding pump backpack which is just the right size for him. It actually looks really cute on him. The nice thing is he can be mobile and go pretty much anywhere as long as he keeps his backpack on.
Yesterday and today we have been trying to figure out the best way and the best schedule to give him medicines. It's kind of a challenge to make sure he is getting the right meds, right doses, and at the right time. So, we set up some charts to remind us what to do. We received all the medical supplies over the last two days. There are so many boxes of supplies but I am glad we have them because we had to replace Rokie's ostomy bag today. We are already getting into a routine which is quite nice.
Friday, February 28, 2014
Monday, February 17, 2014
Tuesday, January 14, 2014
Jan 12-13, 2014
January 13, 2014
It's official. Rokus comes home tomorrow. This is great news but also a bit stressful. There won't be nurses around and we will have to manage all the medical supplies. Here we go.
January 12, 2014
It's been over 3 months, as of today, since Rokus got admitted into Children's Hospital Oakland. It seems like such a short time when I write it, but it has been brutal living it. I talked with the doctors about transitioning us to caring for Rokus at home. We are close to ready. I have been trying to get enough supplies and nursing preparation as possible. So far so good.
It's official. Rokus comes home tomorrow. This is great news but also a bit stressful. There won't be nurses around and we will have to manage all the medical supplies. Here we go.
January 12, 2014
It's been over 3 months, as of today, since Rokus got admitted into Children's Hospital Oakland. It seems like such a short time when I write it, but it has been brutal living it. I talked with the doctors about transitioning us to caring for Rokus at home. We are close to ready. I have been trying to get enough supplies and nursing preparation as possible. So far so good.
Sunday, January 12, 2014
January 11, 2014
Rokus has been taking his feeds well but if we agitate him then he ends up vomiting a lot of formula. If we try to force him to eat or taste a particular food he gets very upset and then begins vomiting. So, lesson learned...don't agitate Rokus and keep him calm.
I talked to the medical staff about having concerns about how to care for his nutritional and gastro-intestinal needs at home. It seems at this point that is our main focus and concern. So, they showed me how the g-tube functions and how to care for it. I also administered Rokie's meds via the g-tube.
I talked to the medical staff about having concerns about how to care for his nutritional and gastro-intestinal needs at home. It seems at this point that is our main focus and concern. So, they showed me how the g-tube functions and how to care for it. I also administered Rokie's meds via the g-tube.
Saturday, January 11, 2014
Dec 28th through Jan 10
January 10, 2014
Today, Rokus was scheduled for a surgery to dilate his esophagus and to swap his G tube to something a little lower profile. Because we expressed our concerns about a previous anesthesia gone wrong, the medical staff let me be with Rokie in the operating room as he got sedated. They also let us be with him as he came out of sedation. He cried very little pre- and post-operation. That was a great improvement since the terrible time.
The GI specialist was very pleased that a portion of the esophagus had remained dilated since almost two weeks ago which was promising. She did have some struggles dilating the stricture further down but they were able to make some improvements. They were able to dilate his esophagus roughly the diameter of a woman's ring finger.
After surgery, we brought him back to his room. There we played and hung a bit. While I was discussing some matters with the pediatric hospitalist, Rokus got nauseous and vomited all over my shirt. Turns out no one gave him Zofran to reduce nausea after anesthesia. During our talk, the pediatric hospitalist informed me it is likely Rokus gets to go home this Tuesday, but is still not firm yet.
Right now, in order to get Rokus home, we need to get his nutrition under control. He needs to be able to tolerate certain volumes and rates of formula. If he can do that, we can take out his Pic line. When his Pic line is out and he is stable, he goes home. His belly scar is healing nicely. His ostomy bags are still disgusting but they are working. His G-tube has a lot of pus, but the doctors say it will always be that way.
I had to learn how to give Rokus and Epogen shot today. I have to pinch a fatty part of his body and stick it with a needle. Trouble is, Rokus is underweight and has very little chubbiness or fat to poke with a needle. We ended up giving a shot in his leg.
January 7, 2014
Rokus has been slowly recovering from his Dec 27 surgery. The med staff has been recalculating his feeds, administering his meds, etc. We had to refigure everything in order to prepare for a homecoming. Right now, Rokus cannot tolerate large volumes of formula in short time periods so the GI team is trying to train his body to tolerate more food in shorter time frames. This is important because it is unrealistic to think Rokus will have an active feeding tube 24 hours per day. The nephrologists have informed us we will need to administer an injection medicine for Rokie 3 times per week. Surgery thinks he is healing well and they recently cleaned up the area around the G tube so everything is clean and tidy. Pediatricians want his nutrition stable and his vitals/electrolytes also stable before they want him home. We have asked for another team meeting and we will see what comes of it.
Family may reunite next week. We shall see how it all shakes out.
December 28, 2013
Rokus got a fever. Last night he seemed fine, or at least how the doctors expected him to be after a surgery. He'd sleep about 20-30 minutes then stir a little, grimace a little, and then repeat the process. He is clearly discomforted. I ended up letting him sleep on my chest for a couple of hours in the morning to relax him. He never really seemed to relax much but I think it made him happier.
In the early afternoon, I came to hold Rokie once Stephanie needed a break and noticed he was really hot. I checked his temperature, and, yep, he had a fever. I called in the nurses and doctor and immediately they began drawing blood, urine, and whatever else to test for bacteria.
After Olivia and I left because we were sick, Stephanie said Rokus' temperature dropped slightly but he's still feverish.
Today, Rokus was scheduled for a surgery to dilate his esophagus and to swap his G tube to something a little lower profile. Because we expressed our concerns about a previous anesthesia gone wrong, the medical staff let me be with Rokie in the operating room as he got sedated. They also let us be with him as he came out of sedation. He cried very little pre- and post-operation. That was a great improvement since the terrible time.
The GI specialist was very pleased that a portion of the esophagus had remained dilated since almost two weeks ago which was promising. She did have some struggles dilating the stricture further down but they were able to make some improvements. They were able to dilate his esophagus roughly the diameter of a woman's ring finger.
After surgery, we brought him back to his room. There we played and hung a bit. While I was discussing some matters with the pediatric hospitalist, Rokus got nauseous and vomited all over my shirt. Turns out no one gave him Zofran to reduce nausea after anesthesia. During our talk, the pediatric hospitalist informed me it is likely Rokus gets to go home this Tuesday, but is still not firm yet.
Right now, in order to get Rokus home, we need to get his nutrition under control. He needs to be able to tolerate certain volumes and rates of formula. If he can do that, we can take out his Pic line. When his Pic line is out and he is stable, he goes home. His belly scar is healing nicely. His ostomy bags are still disgusting but they are working. His G-tube has a lot of pus, but the doctors say it will always be that way.
I had to learn how to give Rokus and Epogen shot today. I have to pinch a fatty part of his body and stick it with a needle. Trouble is, Rokus is underweight and has very little chubbiness or fat to poke with a needle. We ended up giving a shot in his leg.
January 7, 2014
Rokus has been slowly recovering from his Dec 27 surgery. The med staff has been recalculating his feeds, administering his meds, etc. We had to refigure everything in order to prepare for a homecoming. Right now, Rokus cannot tolerate large volumes of formula in short time periods so the GI team is trying to train his body to tolerate more food in shorter time frames. This is important because it is unrealistic to think Rokus will have an active feeding tube 24 hours per day. The nephrologists have informed us we will need to administer an injection medicine for Rokie 3 times per week. Surgery thinks he is healing well and they recently cleaned up the area around the G tube so everything is clean and tidy. Pediatricians want his nutrition stable and his vitals/electrolytes also stable before they want him home. We have asked for another team meeting and we will see what comes of it.
Family may reunite next week. We shall see how it all shakes out.
December 28, 2013
Rokus got a fever. Last night he seemed fine, or at least how the doctors expected him to be after a surgery. He'd sleep about 20-30 minutes then stir a little, grimace a little, and then repeat the process. He is clearly discomforted. I ended up letting him sleep on my chest for a couple of hours in the morning to relax him. He never really seemed to relax much but I think it made him happier.
In the early afternoon, I came to hold Rokie once Stephanie needed a break and noticed he was really hot. I checked his temperature, and, yep, he had a fever. I called in the nurses and doctor and immediately they began drawing blood, urine, and whatever else to test for bacteria.
After Olivia and I left because we were sick, Stephanie said Rokus' temperature dropped slightly but he's still feverish.
Wednesday, January 8, 2014
Family Pictures
I posted several pictures of the Patterson family that were taken by a volunteer photographer. Click on the "Pictures of Rokus" tab.
Saturday, December 28, 2013
Dec 26-27
December 27, 2013
Today was a busy day. Rokus got a lot of surgical treatment done. The surgeon came into work today especially for Rokus. I believe he had time off scheduled but when he got back into town, he came to check on Rokus yesterday and perform surgery today. I really appreciate him.
What happened in surgery-
1. G-tube placement. A g-tube was placed in his abdomen and into the stomach.
2. Epidural catheter. The anaesthesiologist placed the catheter in his lower back to treat pain.
3. "String" placement. A plastic tube was inserted through his left nostril, down the esophagus and out the g-tube through the stomach. It is connected in a loop so Rokus cannot pull it out. It serves as a line that will allow the doctors to access and align the tools necessary to dilate the esophagus.
4. Esophagus dilation - The esophagus was dilated from about 2.67 mm to 7.0 mm. The scarring was very significant which made the dilation difficult.
5. Bowel Revisions - The small bowel has been completely connected from the stomach down to just before the colon. The colon has been connected to the rectum. A double barrel stoma has been placed outside his abdomen and it includes the two ends of the ileum just before the colon.
So, to make sense of this, during surgery, the surgeon planned primarily to install the g-tube and "string" as well as dilate the esophagus. If it took a relatively short amount of time he would investigate the bowels and begin revisions or reconnections although it was earlier than planned. Well, everything went well so the surgeon continued the work on the bowels. The beauty of it is, if the portions that were reconnected heal properly, then Rokus doesn't need more surgeries that require his abdomen to be completely cut open again and his bowels removed. The final gut surgery will be relatively simple and near the surface of the abdomen. I am grateful for the surgeon.
Rokus is in a great deal of pain and discomfort. He is now back to having tons of wires connected to him. His abdomen has been cut from his waistline directly up to just below his pneumothorax. That means all muscle is sore and unusable in his belly again. Poor guy. He doesn't have a feeding tube down his throat but it's replaced with a plastic loop (aka the "string") so that still sucks. Tons of tape is holding all kinds of wires down and he hates tape. This next week will be very uncomfortable for him. He also has a urinary catheter which bothers him but we need to very accurately account for all of his outputs to make sure he is healthy.
At the end of Rokie's surgery, Stephanie and I waited with him in the recovery room. Normally that takes about one hour but this time it took three hours. The post surgical floor wanted him to go to PICU, and PICU, along with the surgery team, wanted Rokus to go to the post-surgical floor. Ultimately we ended up on the post-surgical floor. Now we are back in our room. Rokus is somewhat sleeping. The surgery was about 4-5 hours long with about 2-4 hours of pre and post operation care, not accounting for the post-operation dilemma.
December 26, 2013
The surgeon showed up today and evaluated Rokus. He decided he will operate on Rokus tomorrow. During the operation he will install a G-tube into Rokie's belly as well as dilate his esophagus. He will also inspect his bowels to see their current condition. If the bowels are good then the surgeon may begin reconnecting the intestines. This is a big deal and one we did not expect.
Rokus will go on IV drip beginning at midnight tonight and will not get oral feeds for a few days. He has really wanted to eat food so that will be difficult for him. The sucky thing is he doesn't know what is going to happen tomorrow.
Today was a busy day. Rokus got a lot of surgical treatment done. The surgeon came into work today especially for Rokus. I believe he had time off scheduled but when he got back into town, he came to check on Rokus yesterday and perform surgery today. I really appreciate him.
What happened in surgery-
1. G-tube placement. A g-tube was placed in his abdomen and into the stomach.
2. Epidural catheter. The anaesthesiologist placed the catheter in his lower back to treat pain.
3. "String" placement. A plastic tube was inserted through his left nostril, down the esophagus and out the g-tube through the stomach. It is connected in a loop so Rokus cannot pull it out. It serves as a line that will allow the doctors to access and align the tools necessary to dilate the esophagus.
4. Esophagus dilation - The esophagus was dilated from about 2.67 mm to 7.0 mm. The scarring was very significant which made the dilation difficult.
5. Bowel Revisions - The small bowel has been completely connected from the stomach down to just before the colon. The colon has been connected to the rectum. A double barrel stoma has been placed outside his abdomen and it includes the two ends of the ileum just before the colon.
So, to make sense of this, during surgery, the surgeon planned primarily to install the g-tube and "string" as well as dilate the esophagus. If it took a relatively short amount of time he would investigate the bowels and begin revisions or reconnections although it was earlier than planned. Well, everything went well so the surgeon continued the work on the bowels. The beauty of it is, if the portions that were reconnected heal properly, then Rokus doesn't need more surgeries that require his abdomen to be completely cut open again and his bowels removed. The final gut surgery will be relatively simple and near the surface of the abdomen. I am grateful for the surgeon.
Rokus is in a great deal of pain and discomfort. He is now back to having tons of wires connected to him. His abdomen has been cut from his waistline directly up to just below his pneumothorax. That means all muscle is sore and unusable in his belly again. Poor guy. He doesn't have a feeding tube down his throat but it's replaced with a plastic loop (aka the "string") so that still sucks. Tons of tape is holding all kinds of wires down and he hates tape. This next week will be very uncomfortable for him. He also has a urinary catheter which bothers him but we need to very accurately account for all of his outputs to make sure he is healthy.
At the end of Rokie's surgery, Stephanie and I waited with him in the recovery room. Normally that takes about one hour but this time it took three hours. The post surgical floor wanted him to go to PICU, and PICU, along with the surgery team, wanted Rokus to go to the post-surgical floor. Ultimately we ended up on the post-surgical floor. Now we are back in our room. Rokus is somewhat sleeping. The surgery was about 4-5 hours long with about 2-4 hours of pre and post operation care, not accounting for the post-operation dilemma.
December 26, 2013
The surgeon showed up today and evaluated Rokus. He decided he will operate on Rokus tomorrow. During the operation he will install a G-tube into Rokie's belly as well as dilate his esophagus. He will also inspect his bowels to see their current condition. If the bowels are good then the surgeon may begin reconnecting the intestines. This is a big deal and one we did not expect.
Rokus will go on IV drip beginning at midnight tonight and will not get oral feeds for a few days. He has really wanted to eat food so that will be difficult for him. The sucky thing is he doesn't know what is going to happen tomorrow.
Subscribe to:
Comments (Atom)