James has recovered from his half-birthday festivities enough to start working on his chess game. His blood sugar has improved and he’s had a few good days now as far as that goes. Digestionwise, James summarily rejected the foul-smelling Pregestimil formula that was supposed to be easy to digest. When he was only on that formula (via his g-tube), his gas was much better but he got very constipated. Because of that, and the fact that he kept spitting it out and crying angrily (even when we cut it with Neosure, his old formula, or added vanilla extract to it), we have been giving him only Neosure in his bottle and Pregestimil in his tube, both being mixed into breastmilk along with rice cereal.
Today he convinced his credulous and adoring grandma that he needed more food, so we just upped him to 90 mL per feed (10 of that is apple juice). He is eating about every 2.5-4 hours (he goes longer at night). Check out his weight increase in the sidebar link!
Last week he saw an Ear/Nose/Throat doc, Dr. Austin, for the first time. He looked at James’s smaller ear, the right one, and said there was a very small ear canal, but that he could not tell whether it went all the way in without a CT scan of his head. He also said any ear reconstruction would need to wait until he is much older, and would involve a plastic surgeon. Dr. Austin also said James’s tongue thing, where he sticks his tongue up on the top of his mouth, is because his lower jaw is tight and back, and his tongue is connected to that so it went back as well. He said it could be correctible with therapy, which I think is the case because the therapy he had in the NICU helped him a lot, and that it may naturally loosen up and come forward with time. However, it could also be neurological, and never improve. I hate it when the docs mention possible neurological causes. There is never any way to fix them.
Monday James went to see Dr. Pollack, his geneticist and also the director of the Early Steps therapy program. She was very enthusiastic about how well James was doing. She commented on his alertness, his responsiveness, his eye tracking, the improved muscle tone in his arms and legs (he used to be tight in his legs and arms and floppy in his neck), and how he used his hands. She mentioned some areas to work on, like getting him to turn his head to the left more, tummy time and raising up on his arms, and getting his thumbs loosened up (he still closes his other fingers over them). She also said we should all learn some basic sign language to communicate with him before he can talk.
Dr. Pollack is going to research a possible syndrome to explain James’s conditions again now that we have the new pancreatic insufficiency diagnosis because it makes her think the diabetes is not related to the HPE, but to the overall pancreatic problem. She said his asymmetrical bottom lip is probably due to a missing muscle, a relatively common thing that is probably not related to his HPE diagnosis. She also said we could get him a conductive hearing device, worn on some kind of headband, that would augment James’s hearing until something could be done about his small ear.
The rest of the pictures prove that babies can turn parents as well as grandparents into total fools! After he got used to the slimy insides of the pumpkin, he settled right in.
One more thing–this morning I discovered that James had scooted on his back up into a corner of his crib. He has never moved that much before without having something to push against!Our Journey, Our Journey (chronological) | Comments (6)
Six months ago today, James William Gjertsen came into the world. Although he had a rough time, we believe that the people he has met (and heard from) so far have helped show him that this is a world with love, kindness, and gentleness–echoes of God’s beautiful character in our fallen humanity. Thank you all for representing those qualities for his brand new heart and mind. We celebrated this milestone of James’s life by putting half a candle in one of the scrumptious desserts that have been provided by our friends at Orlando Grace:
Today the GI nurse, responding to our concerns about James’s painful gas and retching, said gas is just part of pancreatic enzyme replacement (I guess he won’t win any burping contests in elementary school, but he can win the other ones). However, when she talked to the GI doc, Dr. Bornstein said to try switching him to a different formula. Instead of mixing Neosure and rice cereal into his breastmilk, we are going to start using Pregestimil LIPIL with the cereal and breastmilk. Hopefully it helps. It has smaller milk proteins, so they are easier to break down; it is supposed to be for babies with fat malabsorbtion. We checked the change with Dr. Yang, and the only thing he had to say is that his poop was really going to stink. We’re ready to brave the stench if it helps in the gas department.
In addition to the age department, James set a new record in the blood sugar department today. He has had three readings of “HI” (above 584) in the last 6 hours. Dr. Desrosiers thinks I gave his Lantus in a spot that was scarred up too much, so it didn’t take. That is easy to remedy for tomorrow’s shot, but in the meantime we are trying to correct with regular insulin without overdoing it.Our Journey, Our Journey (chronological) | Comments (6)
A couple days ago we finally weighed James and confirmed what our arms were telling us—James is almost seven pounds! We has been playing with his anti-diuretic dosage, so that may be his weight without a lot of water he should have retained. Last week when his sodium check came back high, we started weighing his diapers and discovered he never peed during the day, then peed like crazy all night. The endocrine docs had us split his anti-diurectic hormone shot dose in half and give it twice a day, which is helping, but I still think he’s losing too much water. All this is to say, he may actually weigh even more.
Medicaid sent us another letter stating that they have accepted the nursing company’s request for reconsideration, so our night nurse is approved until the end of Nov., when we have to do all the requesting/approving again. Thanks for all your prayers on this matter. We are relieved, although we still have interruptions in nursing from time to time. Here is a telling photo from the latest “gap,” covered by Grandpa Bill and Nana:
Recently James was visited by Grandmommy and Uncle Eric, who were able to make it all the way through The Jolly Pocket Postman with James’s full attention. Besides that, while they were here James did other new things, like get so angry and stiff that he pushed himself over and fell backwards off the boppy (onto a soft quilt). It’s hard to know how much credit to give James when he achieves new things while being really mad. He also started doing a frog-leg type scoot; once while on his back, almost going off the edge of the changing table, and once to get closer to his mirror while on his tummy on the quilt. Mobility is cool, but notably he doesn’t really use his arms to help yet. I am a little worried that I don’t know how to direct his activities to help his motor skills. He has his big developmental exam in two weeks, after which we can start getting therapist visits at home. Right now I guess we will keep giving him tummy time as long as he can stand it.
The enzymes seem to be working, although some side effects are super stinky poop and painful gas. Last night he was screaming for at least 30 minutes trying to work through it. We are all getting better at handling his feeding tube, syringes, etc. while we are holding James. I am so thankful that he got his g-tube when he did, before we even knew he would need to get drugs dosed through it. As far as injectables, he is now up to 3.5 units of Lantus, which usually seems to work well at keeping his sugars in a good range.
Finally, here is a quick movie that a friend sent that I thought James’s readers would enjoy. It exemplifies what I think it means to love fearlessly and extravagantly, and it reminded me a lot of James’s past.Our Journey, Our Journey (chronological) | Comments (3)
Thursday afternoon the test results returned with the suspected diagnosis of severe pancreatic insufficiency. Normal results would have been 200-500, and James scored a big 50, which means his pancreas is dead as a hammer both endocrine- and exocrinewise. We were elated that we could do something new to help him grow. At his visit to Dr. Yang on Friday, we got a weight of 6 lbs. 6 oz., his last pre-enzyme weight. Hopefully it will shoot up from that point!
James also got to visit several of his former “girlfriends” and therapists at Winnie Palmer that day. He woke up from a nap to find ten or twelve nurses with sparkly stethescopes clustered around him oohing and aahing at his chubby cheeks, fuller head of hair, and long eyelashes. Baby heaven! Of course he gave them some smiles; who wouldn’t?
We were in the area to get his weekly blood draw to check his sodium levels. His heels are so calloused from sugar checks and heel sticks they barely bleed anymore. After three unsuccessful attempts by a home nurse to get enough blood, and after our local Quest said they would not do a heel stick but preferred to do an arm stick as for an IV (refer to an old post titled “hard stick”), we determined to continue to come to Arnold Palmer Children’s Hospital for the procedure, because “we tried the rest and they are the best”! The lab ladies there got enough blood in no time from a heel stick with a minimum of pain. Today we started pricking his toes to get sugar checks in order to give his heels time to soften up. It is sad to prick his little piggies, and they are so tiny it is hard to squeeze a drop out.
On the way home from that trip we picked up his enzymes. (Medicaid is now covering about $1000 a month of prescriptions for James.) They are a capsule of little white microbeads that we have to carefully open and dump into a syringe of unfortified breast milk and apple juice, and put through his g-tube right before he eats, every time he eats. At first, the enzymes didn’t seem to phase his appetite. After a day or two, though, he started to slow down a little, which is helping me pull ahead some pumping wise (whew).
Yesterday he did two new things. One was he went 5.5 hours between two feedings (sleeping). I had to sneak in and check his blood sugar twice, and it was ok so I didn’t wake him. Now before you get too excited, he hasn’t repeated that feat. He usually goes about 3-4 hours between feedings, so a little longer than before the enzymes.
The other new thing was that he slept through his morning shots. That has never happened before. With the new enzymes on board, his body is absorbing nutrients differently and he is eating less predictably, so I have been checking his sugars about 10 times a day. He is getting 3-4 extra insulin shots to cover high sugars in addition to his daily Lantus, growth hormone, and anti-diuretic hormone shots.
After we had two nights with no nurse (John’s stepmom stayed up all night with James), I called the nursing company and discovered that our coordinator was no longer with the company. Since then we have had what we always wanted–a regular 5-nights-a-week nurse and a second to fill in the other two days. Dwayne and Andrea are both great nurses–experienced, capable, and able to think beyond rote directions to understand what is going on with James’s sugars.
The latest drama is that Medicaid has rejected our coverage for night nursing because they do not deem it “medically necessary.” The nursing company is appealing that decision, and if that fails, we will be requesting a hearing. Right now we are between grandparent visits, and keeping up with James alone is grueling, although he is a joy!
Our Journey, Our Journey (chronological) | Comments (5)
The book on James may not be written, but the chapter on his medical conditions will definitely be long.
I think one of the greatest pleasures a mother has is feeding her baby; I or someone in this house gets this pleasure with James every 2-2.5 hours. I am now pumping milk every 3-4 hours in a losing race with his huge appetite. The once-packed freezer now only has a few bags of frozen milk left. While the increased room for ice cream is welcome, I’ve been chagrined by how quickly my huge stockpile from all those months of pumping got used up.
All of this made it difficult to hear the GI nurse say that James’s blood work showed malnutrition (due to malabsorption). How could my baby be malnourished when we are pouring so much into him? We have gotten another test back that confirmed his stool has an abnormally high fat content, but we are still waiting on the test for pancreatic elastase that will confirm whether the problem is the pancreatic enzymes. That may be another week out, but the docs say they can prescribe for him immediately after it comes in if it shows what we expect.
James sometimes experiences great discomfort after eating now, another symptom of an enzyme problem. The poor guy. He’s really a trooper. Yesterday he had six shots by noon: his regular Lantus, anti-diuretic hormone, and growth hormone, and in addition, two more regular insulin shots and a Synergis shot to protect him against RSV. He gets that last one every 28 days through the winter RSV season since it would be so devastating to him if he got it.
The last two nights we haven’t had nurses. Thank God for John’s stepmom, who volunteered for the night shift both times. John Piper says that grace is not just the forgiveness that God offers to us through Christ’s death on the cross, but it is a continual stream of power for us to live by God’s strength in the midst of our circumstances. I have felt that grace extended to our family over and over.
Our Journey, Our Journey (chronological) | Comments (3)