Thursday, October 29, 2009

A big bad adventure

Well, we are back from San Francisco. To say that this trip was a bit of a fiasco would be an understatement! The plan was to arrive Tuesday morning, meet with UCSF neuro-oncologists Tuesday afternoon, meet with the Radiation oncologist Wednesday morning, meet with the Pediatric endocrinologist Wednesday afternoon, and then fly out Thursday morning. It was going to be a quick trip. All went according to plan for about the first half of the first day.........

We arrived Tueday morning, and spent a few hours wandering around Union Square. After lunch we headed over to UCSF for Matt's appointment with the neuro-oncologist. We waited for over an hour and a half. That's not such a big deal - I never mind waiting, as long as the doctors take a lot of time with us. This appointment went very well. We talked about Matt's diagnoses and treatment history. There were actually two doctors and they told us that the treatments Matt has had so far are exactly what they would have done there. That was very reassuring! We also talked about treatment options, should Matt's tumor begin to grow again. The appointment was coming to a close and the doctor was performing a neurological test on Matthew. She wanted to watch him walk and noticed him limping a bit. She had him take off his socks and shoes and examined his legs and found his left leg to be swollen and red. She suspected another blood clot and so sent us across the street to the ER.

Sigh.

The ER was, well, interesting, I suppose. Let's just say that the ER in a big city made me REALLY miss our little Primary Children's Hospital! For one thing, UCSF is not a children's hospital. It is huge and the ER sees some crazy stuff. There's lots of security and signs everywhere telling the staff how to deal with homeless people, drug addicts, and people with the flu. Matt was taken up pretty quickly for an ultrasound of his leg and, sure enough, a clot was found. Long story short, we arrived at the ER about 6 pm, I left at 10:30 pm to take Audrey to the hotel once we learned that Matt would be admitted, and Matt didn't get a bed in the hospital until 3:00 am. Warren was not amused.........

The protocal at UCSF is that patients who are receiving IV Heparin (which they use to treat blood clots) must be treated in the intensive care unit. Wednesday morning, I called the answering service for the radiation oncologist to pass along the message that we would not be able to make our 8:30 am appointment. We spent all of Wednesday in the ICU, trying to convince everyone we spoke with to let Matt go. :-) Hanging out in the ICU of a hospital in another state, during flu season, with an infant is not exactly a great time. Thankfully, they kept Matt in an isolation room and they did allow Audrey to stay with us (infants who are not patients are not allowed in the ICU at Primary's). During the stay, it was found that for some reason Matt's Lovenox levels were not right. He was on the very low end of the therapeutic range last week but when they ran the labs again, his levels were not in therapeutic range. It was decided to increase his dosage of Lovenox.

Miraculously, the last doctor we were to meet with, Dr.Lustig, happened to be the attending doctor the night we were in the hospital. Even though we had to miss Matt's clinic visit with him, Dr.Lustig was able to come up to the ICU and meet with us right there. Ultimately, even though the trip didn't go as we had envisioned, Matt was able to meet with two of the doctors we had scheduled, and the other was able to call us and we had a telephone conference. It all worked out! I'm so thankful they found the clots. It was quite a good catch, as we hadn't even been visiting them for that purpose. It was a blessing!

Matt was released after only about 48 hours in the ICU. While we were in San Francisco there was a problem with the Bay Bridge and it was closed. Of course, the Bay Bridge is on the way to our airport....... Between a stay in the ICU, excess cab bills back and forth to the hospital from our hotel, and a $200 cab ride to the airport (we had to go clear around to another bridge), this turned into quite an expensive 'little' trip!

The doctors at UCSF presented Matthew's case at 'Tumor board' the day he was released. All of the doctors we had met with were present. It was determined that they agreed with all of Matt's treatments he has had so far. They wouldn't have done, for instance, a different chemotherapy, or radiation. They also agreed that our plan of not doing anything right now, while his tumor is stable, is the right choice. We will continue to watch the tumor closely and if it begins to grow, we will do radiation at that point. Also, all the doctors agreed that a vagotomy (the surgery that will hopefully help stabilize Matt's weight) wouldn't hurt future options for his cancer treatment. I think we are going to go ahead with the surgery. It seems like a pretty minor procedure that could have very major benefits to Matthew. He has gained 12 kg. since his last visit to SF 4 months ago - that is almost 27 lbs. The potential side effects of the surgery seem less problematic than the side effects from obesity. We pray we are making the right choice. We have considered our options for several months and are feeling pretty comfortable with the decision.

13 comments:

Karrianne said...

oh man! Sorry the trip kind of got all crazy, but it sounds like you did end up with some good news! That's got to be reassuring when a team of experts tells you they think you did all the right stuff!

Hope that next surgery goes well! I'm sure it will help Matt feel so much better if he can get rid of some of that weight! After what you told us of his situation at Park City it seems like that would really be wonderful for him!

Good luck with everything! Love you guys!

EmilyCC said...

Oh my goodness! That adventure wore me out just reading about it.

Sounds like some good news, though! Keeping you guys in our thoughts and prayers.

The Uffens Family said...

Yikes! I think we all get our share of these fun "adventures" in our lives - yours sounds like one of the most exciting ones! (and $200 for a cab? geesh!)

Deborah said...

I'm so glad you guys survived your problematic trip and that they found the blood clot.
Good luck with the surgery. I hope it goes well and we'll be praying for you. Let us know if you need anything.

Just dandee said...

Wow. So sorry the trip was so crazy, but glad you were able to meet with all the docs you needed to. We'll keep praying that the next surgery will go well.
Love you.

Katie said...

Wow! Never a dull moment, huh? I am really glad that you got some good info from those docs. It is always reassuring to have another set of brains thinking over Matt's case.

Katie said...

Wow! Never a dull moment, huh? I am really glad that you got some good info from those docs. It is always reassuring to have another set of brains thinking over Matt's case.

Ben said...

That is a crazy trip! So glad you are on track with Matt's treatment, and we wish you all the best in his surgery. We'll keep you in our thoughts and prayers.

Amanda said...

Sorry you had such a chaotic trip but glad that the outcome was good overall. Having lived in the Bay area for a while I can totally understand the traffic nightmare - and how road rage happens. Glad you survived.

Anonymous said...

It must have been a real strain for all of you. I admire how you guys are handling all of the stuff you have to go through. You seem to handle everything with grace. Wish you did not have to do it. I also understand the traffic problem you had. Driving in California can be a nightmare. Hope Matts surgery goes well. Let me know when it will be done. I can help out if you need me. From Grandma.

courtney said...

i'm so sorry your trip was so crazy, but i'm grateful it all turned out & that you were able to meet with good docs & that he was presented at the tumor board.
i'm always thinking of you and pray for your beautiful family. such wonderful parents you are!
i'm glad you've come to a peaceful decision on the surgery. that's the only way i feel i can function, is having that ok feeling when i decide something.
love you allison, courtney

Tara Bergsjo said...

Wow! What a trip! I am so glad the doctors were able to catch the clots! What a scary thing! You are such a wonderful patient mom! I will continue to pray for Matt and the rest of your beautiful family!!

Christina said...

What a trip for you! I hope the surgery goes well and helps stabilize things for Matt.