Yesterday, Toby made the hike back to U of M to check in with the pulmonologist. His lungs have been doing extremely well the past month or so. But over the weekend he started huffing and puffing again. It is probablyh is old friend, fluid. He is having a few doses of extra-strength diuretic plus increased doses of his regulars. He is also receiving another 5 day blast of steroids. His weight was up to 11 lbs 12 ounces. Good show! I do wonder, though, what he would weigh today after the effective diuretic; his wet diaper this morning was so heavy it felt like half a pound to me! The extra drugs will mean a trip to the lab on Friday to check his electrolytes. But otherwise, we are hoping for a few days at home just hanging around and being WELL. We have also been sorting clothes as Toby at long last graduates from newborn size- a cause for celebration!

Toby is fully recovered now. The official verdict is rotovirus and it lasted about a week- with yesterday being the first day he seemed back to his old self. He is doing well other than discomfort from the reflux. Judging by his second chin, he is probably gaining weight well again. He will visit his pulmonologist on Monday and the pediatric surgeon on the 13th.

It was great to all be home and together for Christmas and to be able to celebrate the Christ child: his grace and mercy in coming to us so long ago and in staying with us each day now.

Toby continues to fight what is probably another bug. No one else here is sick, but since it started out as vomiting and now is mainly diarrhea, the pediatrician thinks it is probably an illness. We went to his office today and learned that Toby has only lost 4 ounces (I was afraid it would be much more after the weekend we have had), and he is in pretty good shape. I have been quite concerned about dehydration and will continue to watch him closely since he is still ill. He is not yet back on his full strength, high-calorie formula; the last time I tried he had more vomiting. But we are working back towards it. He is also showing more of his old symptoms of the reflux so I guess the honeymoon period of the latest regimen is over. At this point, it feels like every day we manage to stay home and not return to Mott's is another victory.

Toby began vomiting again yesterday and by this morning the score was 2 feeds down and 6 back up again. I thought we were headed for a fast trip back to Ann Arbor. But the doctor on call is letting us try to get him past this at home. He is back on Pedialyte again and we are slowly reintroducing the milk. He has not had any more vomiting since this morning and appears to be hydrated. So we will keep going and pray that we can get him back to a good point again. He does not act sick and I am not sure if this is another bug or just his reflux/GERD rearing its head again. More wait and see?

"If any of you lack wisdom, let him ask of God- who gives to all men liberally . . ."

We are asking.

We have already been home two days. The first day was spent sorting out supplies and the new schedule of feedings and meds. (Toby did end up back on the 8 feeds/round the clock schedule since he couldn't handle the larger volume.) Today we visited the pediatrician for a weight check. He is steadily climbing higher and was about 11 1/2 lbs today. He will have another weight check on Tuesday and then the plan is to enjoy the holidays at home before the next round of medical visits begins in January. The kids are diligently washing their hands, using Purell, and kissing the BACK of Toby's head, doing all they can to keep him healthy and home. Toby, delighted to see them all, is smiling and doing the baby dance of joy. Wiggle, wiggle.

WE ARE HEADING HOME TODAY

Big news. We are finally pointed towards the door. Toby will be following up with a pediatric surgeon in January, but is doing well enough to go home in the interim. He weighs almost as much as he did when he arrived and is gaining well. He is eager to get home where they do not wake you up to do blood draws and where he can be with his brothers and sisters. As he has felt better, he has definitely found this place to be lacking in fun. So good-bye, Ann Arbor and hello, Litchfield. Every turn of the wheels on the way will include thanks to God for the good care Toby has had and for HOME.

Toby has had two more exceptionally good days without vomiting. He is more comfortable than he has been in months- which is great to see. He has done well with the extra calories. Today, he is trying a greater volume so that we can cut back to 7 feedings a day again. And they are watching him "at least one more day".

Tobias continues to do well. The remaining problem keeping us here is a lack of weight gain. (Him, not me.) Despite an increase in the volume and number of his feedings, he has not gained the last few days. Today they are going to figure out how to increase the caloric density even more. He needs to show that he is able to gain and then, home we go. Toby's docs are still trying to communicate with the surgeons (won't be till Monday at this point) so we can get that set up sooner rather than later.

Toby is having a very good day. We are back to the same feeding methods he's been doing at home: tube feeds every three hours and two bottles a day. They've even increased the volume slightly to about 3 1/3 ounces per serving. And he is looking good. The doctors continue to say that we will go home "maybe tomorrow". They are talking to the surgeons first and trying to make sure everything is in line for that. Additionally, Toby needs to be gaining weight properly again. He is not yet back up to his weight at admitting- which was actually down significantly from his discharge weight two days previously. Basically, if he is going to go home to wait for surgery, they need to know that he can do well in the interim.

Last night Toby had slow drip ng feedings. Today, he is back to the regimen he was on at home: 3 ounces every three hours, either down the tube or (2x a day) by bottle. We expect a decision tomorrow about going home. He is having some discomfort, but the question is whether or not he can limp along very long without surgery. It is pretty much decided that he is going to have a nissen fundoplication to deal with the reflux problem since the other treatments are maxed out.

Toby continues to do well. He is still on the iv nutrition. That will be discontinued tonight. The volume of his drip feeds has been increased to the full amount. This evening we are going to try switching the nj tube back to an ng tube (in the stomach) and see how he does with that. It would be better to go home with an ng that I can place myself rather than an nj which requires x-rays for proper placement. SO, . . .
It IS possible that we will be out of here as soon as tomorrow. It depends on how well he does with the ng feedings. We are planning to go home with a pump and continue the drip feedings for a while. Maybe he will be able to transition back to a more standard intake pattern soon. It is very important right now to get some good growth going. Many things should improve just by getting him bigger. The doctor feels that we're already about two months behind where we would have been without all the ups and downs of the last few months.
Toby definitely feels better but is still fussier than normal. Pray that I will have wisdom as I watch him and try to assess how he is doing. We are in agreement with the doctors that when he goes home this time, we want it to be to stay.

Happy belated 9 month birthday, Toby. It kind of snuck by me on the 6th.

Toby continues to improve. He has not had any spitting up since yesterday morning. Hooray! He is perking up in other ways also and is awake and playing more. He continues to receive iv nutrition to build him back up and also a slow drip of normal feeds. After about a day, they will stop the iv, increase the volume of his nj feedings and consider trying an ng tube again. This peeling back of the layers of intervention that are now in place should help establish the level of help that he needs as well as sort out what problems have been from reflux and what was caused by the virus. It's been difficult to know what was what. The pulmonologists still seem to think he is heading for surgery at some point, though hopefully not during this hospital visit. I am praying that is not necessary, but did have an initial meeting with a surgeon today- strictly for informational purposes.

One point of great encouragement for me: Toby is accepting the bottle again. He drank 1 1/2 ounces yesterday and again today without any apparent discomfort afterwards. Two days ago, I wouldn't have believed it was possible to get back to this point so soon. New mercies each new day.

Toby is a little bit happier today than yesterday, which was a little bit more than the day before, so the trend is in the right direction. He is still subdued and more somber than usual, but appears much more comfortable.

He continued to vomit yesterday and during the night. This morning, the doctors decided to change his ng tube for an nj tube. This means that instead of dripping into his stomach, his feedings would go directly into the intestine. It's another attempt to control the reflux by keeping his stomach empty- which is also the purpose of the reglan. They also decreased the volume of the feeds and restarted his iv for hydration. Tonight he will receive some intravenous nutrition to help him regain some strength. The plan calls for a few days of this with some more observation. Always, he is getting more tests to screen for other possible problems.

The surprise today came when we went down to x-ray for placement of the nj tube. After the initial x-ray, they told us he already has an nj and sent us back upstairs without doing anything. His nurse had put an new ng tube in Saturday. Evidently, it went in a little further than usual and is already in place where they wanted it. This may in fact help us progress a little faster through the observation period since it means we've already been observing the effects of that change for two days concurrent with the reglan.

Rx: more wait and watch.

What do you see?

Today has been declared a day of observation. Toby has received some definite relief with the reglan and his comfort level is a lot better. He is still spitting up some, though, even with his stomach mostly empty. There is a long way to go from where he is as far as nutritional intake to where he needs to be for proper health and growth. The plan continues to be to work towards that over the next ?# of days while carefully watching the various systems (digestive, respiratory, nervous) for positives and negatives.

Hebrews 12:2 "Let us fix our eyes on Jesus, the author and finisher of our faith, who for the joy set before him, endured the cross. . ."

A plan

Yesterday was a difficult day for Toby. He was- and continues to be- very uncomfortable and cannot relax enough to sleep without some Tylenol. He also began vomiting again this morning after the latest transition from pedialyte back to breastmilk. They have lowered the rate back down and are continuing to try to get some nutrition into him. After flushing out the extra fluids yesterday, he was down half a pound from a week ago; we are losing ground again.

A new day, a new plan.

The virus has probably pretty much cleared out of his system leaving his reflux problems worse than ever. Since it has been an ongoing and unresolved issue for several months now, his doctor presented me with three possible scenarios.

A week ago, he was starting a new drug which is supposed to help manage reflux by moving food out of the stomach quickly. He became ill before we really had a chance to see how it was working. Toby is starting that up again today in conjunction with the two antacids he also takes.

Possible outcome #1:
This solves the problem enough that he is able to be discharged next week and the reflux continues to be managed medicinally.

Possible outcome #2:
This solves the problem enough that he is able to be discharged next week, but the long term results are not good enough. We explore a surgical remedy.

Possible outcome #3:
The drugs are not enough at this point to enable him to get the nutrition and comfort level he needs. We consider a surgical remedy before a discharge.

I'm glad we don't have to be smart enough to figure out what should and /or could happen. As always, we pray a lot for his doctors and wait to see what the Lord-who-is-good has in store.

Toby had more frequent vomiting yesterday and last night. He has been switched back to 100% pedialyte. His nurse just hooked him up to a pump so that his feedings can drip in slowly and continuously through his ng tube instead of hitting his stomach all at once. The doctors hope he will tolerate this better. They suspect the continued vomiting is a combination of the virus and the ongoing reflux problem. He is starting out with a small amount of pedialyte. This will be gradually increased until he is receiving the normal volume of his feedings. (He eats 3 ounces every 3 hours, so that would be 1 ounce per hour.) Then they will try to begin the switch back to milk. I have no idea how long this will take, but it sounds like a slow process.

The other cycle of fluid retention-fast breathing-diuretics-electrolyte imbalances-and doses of potassium also continues. I guess it's just something they have to manage while they try to keep him hydrated without letting his lungs get too "wet".

Toby throughout all of this has managed to remain a smiley baby. But today he is quite fussy, so I know he really is not feeling well.

No more sick kids at home, though!

Stop me if you've heard this one before . . .

Toby did pretty good during the night, but started the day off with more diarrhea and vomiting. So we will be here a little bit longer. One more sister is down at home, but they seem to be bouncing back up much faster than Toby.

Onward and upward!

After a good night during which Toby was keeping some pedialyte and some milk down and had his iv turned off, he began again this morning with the vomiting and diarrhea. So we are back to square one- on an iv and working up from small amounts of pedialyte.

He had his upper GI test yesterday and it found no problems. They have decided to wait on the other tests which are not directly related to this illness. We're pretty sure now (99%) that it's a virus since the news from home is that another sister is down.

Where to begin? I did not get an update written yet about last week's hospital stay, and here we are again!

Tobias was admitted Wednesday the 26th after a pattern of increasing desaturations (low oxygen level in his blood) culminating in several prolonged episodes during the night on Tuesday. A sleep study and a variety of other tests were performed during his stay without any significant findings. His sat level remained frustratingly good so that we are still ignorant of what caused the problems. We were able to consult with GI doctors about his reflux problems and they suggested a couple changes with his meds. A test or two which might be useful were not able to be done because of the holiday weekend but should occur at some future date. His breathing rate had been high for about a month and remained so at discharge- with the hope that some of the changes made would lead to improvement over time.

We arrived home Saturday evening in time for a Thanksgiving celebration. Sunday was spent trying to find a new schedule which would accommodate the changes in breathing treatments and meds. It seems like a giant puzzle sometimes: so many hours apart for these, that one on an empty stomach, this one with food . . .

Early Monday morning, Tobias began spitting up mucous, small amounts but quite frequently. I suspected his new GI medicine (reglan) was to blame and put a call in to his pulmonologist. It progressed throughout the morning from clear to green to brown plus Toby began to look and act sick. We went to have his electrolytes tested and to his pediatrician that afternoon. By this time, he was also having loose stools and beginning to dehydrate. So the pediatrician and pulmonologist agreed to a transport by ambulance from the doctor's office back to Mott's in Ann Arbor.

After 4 hours in the ER playing pincushion and other fun games (some old, some new), we landed right back in the room we were in last week. Home, at last?!

Toby quickly improved on the iv. But we are thankful to have the same doctor on call again as we did during his stay in October and last week. (Dr. Toby- a doctor with a very good name). During the night, the extra fluid caused some problems with his breathing which she was able to speedily diagnose and treat appropriately. His treatments are often a balancing act between problems on either side.

It is not sure whether his problems are from the change in meds or just a good old-fashioned virus. (One of his sisters went down sick today, also.) We are waiting now for him to be able to tolerate normal feeds again and then we can head home. Maybe tomorrow. So far, he has kept down a little pedialyte.

Meanwhile, this afternoon he will get one of the tests we weren't able to do last week. (Saves a trip another day!)

How about a summary so we don't get lost in the details?

Toby is ill now but has been doing well. He has been gaining weight and growing at a good rate. Even sick, he now weighs over 11 pounds. He is having problems with reflux and breathing which should be dealt with over time but which are not critical. More consultations and tests may be in the future.
He made it 8 1/2 months without getting ill. We have a lot to be thankful for in this Thanksgiving season.

Alright, Mom called from the hospital and Toby has now been admitted. The doctor predicted that the problem was either with his electrolytes or because of the new medication they just put him on. His electrolytes are fine, so they are going to run a couple of tests and watch him overnight.

Toby was able to enjoy another ambulance ride today. I'm not sure of all the details, since I was not there, but apparently he was spitting up blood again. So Mom took him to the Hillsdale Hospital and they sent him to Mott.

The last time I spoke with Mom, Toby had not yet been admitted. They were still sitting in the ER, letting people poke Toby with needles.