Thursday, February 03, 2011

09.10.2008 - Winding Down

From Julian's COTA Journal

Hello dear Friends and Family.

It has been almost 4 months since Julian's transplant, and it appears we will be winding down our stay soon. Technically we could have left as early as this week, but Julian has an Ear/Nose/Throat consultation tomorrow to try to shed some light on the obstructive sleep apnea he seems to have developed over the last few months. We really don't feel comfortable leaving without some answers or some interventions on the table, as OSA can be a serious and sometimes deadly problem to have. I believe several factors are involved...his NG tube which causes congestion in his nose, and the fact that he gained 40% of his body weight in 12 weeks which I am sure is causing pressure on his throat which wasn't there before. During the deepest sleep, it just doesn't want to stay open. They may suggest taking his tonsils out, which we would want to do here. We don't know. The first step will probably be a sleep study. Again, timing-wise I don't know.

So, we could be leaving this weekend or it could be a few weeks.

Kidney-wise, he is doing fabulously. His case is very "boring" which the docs like. He had his 3 month biopsy on Friday and the preliminary reports are indicating there are no signs of early rejection, and the prograf toxicity to the new kidney is extremely-low-to-none. Rather ironic that one of the main immunosuppressant drugs also is nephrotoxic. Usually, in high doses which he is past needing.

Thank you for your continued prayers. Take care everyone!


09.07.2008 - Biopsy Follow-up

From Julian's COTA Journal

Julian is doing well. He's walking tenderly, like there's some pain in his abdomen, but his spirits are up and he's engaging like normal. We received a phone call from one of the nephrology docs yesterday afternoon, to tell us that the preliminary pathology report indicated that there was some bowel content in the collected sample. What this means is that when they went in to collect the sample (they use an instrument that looks like an oversize needle to effectively take a core sample of tissue), they "knicked" (read "perforated") the bowel. As such, they put Julian on a 10-day round of anti-biotics and told us to watch for distension and inconsolable pain. So far, none of either. Please pray that he continues to heal - and that the biopsy shows the docs what they want to see. We'll see the formalized results of the biopsy at the end of next week.

This Thursday, Julian has an appointment with the ear/nose/throat docs to talk about his newly developed OSA (obstructive sleep apnea). There will probably be a sleep study at some point, but we don't know when. If they can't fit him in anytime soon, we may just vacate Palo Alto and come back for the sleep study in conjunction with one of his follow-up visits. We'll see.

In anticipation of our pending departure, Stacy did a clean sweep of our room and packed up a couple of boxes of "stuff" for shipping. We have more than will fit into our van, so we have to ship some of our belongings vis UPS. The room - basically the size of a small (!) hotel room - feels less claustrophobic already.

We're feeling especially weary at present. It seems like we should be packing up and leaving (ie. getting on with the next step in our lives) right now. For some reaosn, that's not happening. I smile as I imagine some of our friends telling us to "suck it up" and gut it out, and of course that's what we'll do. The end is in sight. It just doesn't look the way we thought it would. We're encouraged by Julian's generally sunny demeanor. He's really too young to realize any of this is out of the ordinary, so he just goes with the flow, and smiles all the way.

That's it for now. I'm sitting at San Jose airport, waiting for my flight to Denver. Stacy & Julian are back at RMH, planning their evening. I hope we can all get some good rest tonight.


09.05.2008 - Biopsy

From Julian's COTA Journal

Today Julian had his biopsy.

We checked him into the day hospital at Stanford Children's at 8:30 so they could set his IV at 9:00. The IV showed up at 9:30 to prep him, and had the IV set by 10:30. At 11:00 it was time to go. I kissed him good bye as the anesthesiologist put him to sleep, picked up my pager and headed for the cafeteria.

The procedure took over an hour, and I was ushered into recovery around 1:00. The anesthesiologist reported that she encountered Julian's apnea problem almost immediately after he went under, and had to use an L.M.A. Not sure what it stands for, but it's used to keep the airway unobstructed without having to intubate him. As he came around, we had to continue to stimulate him so that he could breathe on his own.

We were in recovery until sometime after 3:00, when we were transferred back to the day hospital, where our mission was to lay still until 8:00 – roughly eight hours post-op. Julian had something of a rough afternoon as he struggled with gas, pain from the biopsy, and the after-effects of the anesthesia. However, as evening came on, his demeanor improved, and around 9:00 we were told we could leave.

We returned to the RMH sometime after 9:30, where Stacy gave Julian his evening meds. I'm in the dining room as I write this, having left Stacy and Julian getting ready for bed, and both in good spirits.

Julian has to remain relatively still for the next few days. Normally that'd be quite a feat, as his favorite thing in the world is still to “get down run around.” However, with his body still recovering from today's procedure, we're hopeful that he can lie low for the weekend. A little movement & walking is allowed, but the docs don't want him running and wrestling just yet. He's still pretty tender, so we'll have to wait and see how the weekend progresses.

And that's it for our transplant-related activities here in Palo Alto. For the time being anyway. There are still biopsies at 6- 12- and 24 months, as well as some sort of regularly scheduled visits for follow up. But as far as everything we hoped to have done during this stay, we're done. However...

Now we have a consult with the ear-nose-throat docs so we can begin to understand Julian's newly developed obstructive sleep apnea (OSA), and what needs to be done about it. The kidney docs have told us that if Julian needs surgery (i.e. tonsils), they want it done here so they can remain directly involved. Which shouldn't be a problem. It just means we're going to be here a little longer than we expected.

Thanks for all your prayers and support. Please continue to pray with us for Julian's recovery from “all of this” as well as his long-term health. It sometimes feels as if we're engaged in some sort of marathon, but through all of it, Julian has been a trooper.


09.04.2008 - Before the Biopsy

From Julian's COTA Journal

I've just arrived at RMH. Tomorrow (Friday) is Julian's 3 month protocol biopsy. It was supposed to be two weeks ago, but he wasn't feeling well, so it was postponed. It's late and Julian is asleep. Still snoring heavily. We're going to give him some Claritin and see if it makes a difference.

Tomorow will be a long day. Stacy will check Julian and I in at 8:00. Julian will have his monthly anti-rejection med infusion. At 11:00 he'll go in for the actual biopsy. After he comes out, he has to lay still for 8 hours. So, he and I will be in the day hospital watching Pixar flicks and napping until dinner time.

Cheryl is here now too for her 3-month checkup. Things have gone well as far as I've heard. As Julian and I are hanging out at the hospital, Stacy will be taking Cheryl back to the airport.

It's late and I'm tired. Tomorrow's a big day. Please pray all goes well.



09.02.2008 - First Prayer

From Julian's COTA Journal

Julian said his first prayer tonight:

"Dear Lord. Thank you for Julian. Thank you for daddy. Thank you for momma. In Jesus name we pray. Amen."

Amen indeed.

08.30.2008 - Rough Nights

From Julian's COTA Journal

Sorry to keep you in suspense everybody. Julian's apparent sleep apnea issue has not gone away, but seems to come and go. For example, last night was a relatively good night, whereas right now he's asleep (nap time!) sitting in his stroller because lying down he was unable to breathe fully. Even now, he's snoring pretty heavily. Not sure what to make of all this. We have an appointment on the books for Sept. 11 with the Ear/Nose/Throat (ENT) doctors here at Stanford Children's Hospital. We'll see what they say. In the mean time, none of us are really getting the rest we need. Please pray that this situation resolves soon so we can all get a good night sleep.



08.28.2008 - Sleep Disorder

From Julian's COTA Journal

A quick note with a prayer request this morning.

Over the past few weeks, we've been noticing Julian snoring more and more at night. This past week, it seemed to have gotten worse, to the point where from time to time it sounded like he was gagging. Two nights ago, Stacy got very little sleep, as she was up with him for most of the night, constantly having to remind him to breathe while he sleeps. Last night, Stacy brought his car seat up to the room to see if he could sleep in that. I have yet to hear whether the change in position made a difference.

Obviously, this kind of thing is disruptive to everyone's sleep - Julian's and ours. Neither one of us can stay up with him constantly, especially in this season when there's frequently only one parent present. We're all suffering at this point.

Stacy is going to press the issue today in clinics. Please pray that the docs will have some constructive direction as to how to proceed: Do we alter his meds? Remove his tonsils? ??? In the mean time, please pray that we can all sleep soundly - and safely - through the night.



08.24.2008 - Change in Plans

From Julian's COTA Journal

After our time at the "speakers" we loaded up the van and headed off to Half Moon Bay in search of "surfers and wabes." The beach at Half Moon Bay was a little crowded, so we headed up to Montara State Beach. We had a peaceful time walking up and down the beach in our bare feet, and although we didn't see any surfers, the wabes were quite dramatic. And we did stop and watch a game of beach volleyball ("bolly-ball") for a while before heading back.

Now, Stacy has been fighting off what we hoped was some kind of allergic reaction for most of the weekend. Today, however, after hitting it with Benadryl and Claritin, she continued to drain. We're left with the conclusion that she in fact has a head cold. As such, we checked her into a hotel for the night, and I'm staying here with Julian at the Donald House, delaying this week's return to Colorado by at least a day. Bummer for everyone - especially Stacy.

Donald House policy is that if someone in the room gets sick, that person (or the whole family - our option) has to move out (to a hotel in our case) until they're better. That's seriously inconvenient as it involves moving all your stuff out of the room so another family can have it. However, even more serious in our case, is the potential of Julian catching whatever it is Stacy is fighting, and possibly pushing his protocol biopsy out even further. As it stands, we think we may be on our way home in as little as 3 weeks, assuming the biopsy goes well on September 5th. The prospect of pushing that date out any further in the event of Julian getting sick is not one we wish to entertain.

So, I'll be here for one more night than originally planned, and Stacy and I will reevaluate in the morning. If she's feeling better, great - I'll fly back to Colorado on Monday. If not though, I could be here longer. Please pray that whatever Stacy is fighting clears up quickly.


08.24.2008 - Tube Trauma

From Julian's COTA Journal

After about 24 hours without his feeding tube (we'd been feeding him his fluids every hour by syringe), the docs indicated that they want Julian's feeding tube back in. Their fear is that without it, he may not be able to sustain the necessary "on-the-high-side" blood pressure required to fully profuse the new kidney. Older/larger transplant kids don't need the tube, but smaller ones need the extra help. Sigh...

So, we put it back in. It took four attempts. Honestly, it feels like we're torturing our son, putting this thing back in. I hold him on my lap and Stacy threads the tube up his nose and down his throat, all while Julian cries, chokes and coughs. That was around 10:30 last night. He had a rough night after that, snoring and coughing on-and-off through the night. This morning, he's in good spirits, although it sounds like his sinuses are gunked up. Poor guy.

But he's happy and energetic, playing and running around, still eating, still no fever. We're hoping the cough subsides - it's non-productive and seems to hurt whenever it happens. When the coughing fit over, he looks at us and tells us "I'm okay."

We're about to go across to the street to the Stanford Shopping Center (aka the "speakers" to Julian), for some ham & cheese & coffee at La Baguette. Please pray that this cough doesn't turn into anything. Still nothing in his lungs - we're pretty sure it's all upper respiratory, but we really don't want it to turn into anything.


08.23.2008 - Coughing Cont'd

From Julian's COTA Journal

Julian woke up from his nap yesterday afternoon appearing to be in some distress. He started coughing and gagging, and within a few minutes vomited up his NG (feeding) tube. We yanked it, getting it "out of his head" completely, and he calmed down. We put him in the bath - and he seemed to be fine.

But then we're faced with a different problem: we had long suspected that his current tube placement may not be a good one, and that it was causing at least part of the coughing problem, but now that it's out, how do we maintain constant feed and hydration?

Well, last night we pumped him full of formula before he went to bed, giving him most of what he would otherwise receive via the tube & pump in advance. Then we let him sleep. We all had the best night's sleep we've had in a while. He did wake up a couple of times with what seemed to be painful coughing fits, but they were relatively short, and he fell asleep again once they were over.

We just administered his 9:00 a.m. meds by mouth - and he went back to sleep.

I think we'll try to fee/hydrate him today by mouth and see how it goes. If the tube is really that uncomfortable, it may be worthwhile talking to the docs about options that don't involve it. Older children who receive kidneys don't end up with a tube because the docs know they'll follow parental orders to drink x-amount of fluid per day. If there's some way we can work out a similar system (w/ the docs' blessing of course), it may be worth considering.

If not, we'll put the tube back in and hope for the best. It's just so nice to hear him breathing in his sleep and get the sense that he's not having to fight for it.


08.22.2008 - Part Two

From Julian's COTA Journal

We went out for a day of touristing up at our happy place at the ferry terminal and along the waterfront between the terminal and our parking lot south of the Bay Bridge. Julian seems to do best when he's moving around - walking, running - as opposed to remaining strapped into his stroller, so we had him walking most of the time. Well, touristing is hard work, so he fell asleep in the van on the way back to Palo Alto. I carried him upstairs, and he's asleep in his crib as I write this. He seems to be sleeping soundly - no coughing. Thank you Lord

While we were having lunch, our post-transplant coordinator called to let us know that Julian's protocol biopsy has been rescheduled until September 5th - two weeks out. If all goes to plan, Julian will have his biopsy, and if everything looks good, the docs will probably release us the following week. That means we'll probably be leaving Palo Alto on or around the 12th.

So that's our hope - that whatever is bogging Julian down right now will clear up in the next few days, and he'll be back to his bright & sunny self well in advance of the biopsy. Then, we're praying that everything checks out for the follow-up, and we can go home. Please pray with us to this end.