Tuesday, November 20, 2012

Time

Lately I have been sort of obsessing over time. Or should I say, the counting of days, weeks and months.

Two weeks ago Sheila and I took Toodles to Boston Children's for some scheduled appointments. Scheduled. As in no surprises would take place because these were PLANNED appointments.

Remember what they say about the best laid plans?

Yeah.

She was scheduled to see the Gastroenterologist and something called CP. I assumed CP stood for cerebral palsy which is what kiddos like Tessie, who have no known diagnosis. generally end up being labelled with.

And we all know the saying about assuming anything, now don't we?

The GI doc was very nice and we had a good appointment. She did want a couple of xrays taken to check out Toodle's belly but still, not a big deal.  We agreed she would review the xrays later and pending any terrible findings, we would see her again in two months.

The next day we had the CP appointment. The waiting room was quite busy and one mom told me that it wasn't uncommon to wait hours for a scheduled appointment. I am here to tell you, that lady wasn't lying. We waited nearly two hours to see the doctor. The appointment was for 9:30 and we saw the doc at around 11:25. At one point I even told Sheila that I thought we should just leave. After all, this was just an appointment to be told that my kid had CP. I know my kid has CP (not really though considering what she really has is genetic and has never been seen before in anyone else, thus the CP diagnosis).  But still, something told me to wait. So we waited. And waited and waited.

When we finally got to see the doctor, lo and behold, he was an Orthopedic Surgeon whose specialty was dealing with kids with CP. Well, huh. That was a tad unexpected. Still, I though it was good because Tess was overdue to see and orthopedist. He looked her all over, asked me some questions and then sent us for...can you guess? Yup, more xrays. Two of her hips and two of her spine. Back to radiology we went. Afterwards we went back into his office so he could talk to us about the results. And I still had no clue anything was amiss. Just blissfully unaware that he was about to punch me in the gut.

He was showing me the xrays of her hips and was talking away about how her hips were coming out of the joint and bone was rubbing on bone and she most likely had pain and would have more pain from it and if something wasn't done soon then we would miss our window to fully repair them and on and on...

Then it hit me. He was trying to tell me that Tess needed surgery. Major surgery. On both hips. Soon.

I lost it. I just started bawling in front of this poor doctor who had known me all of about fifteen minutes. I apologized for falling apart and I swear to God, this doctor got choked up. His eyes got all watery and he had to keep clearing his throat and his face was all red as he was saying to me, "I suddenly have a tickle in my throat." As a mom, this made me love him. I just knew that he got it. He understood and sympathized with me. Once I pulled myself somewhat together, he told me that he would suggest getting the surgery done sometime within the next six months. In the meantime, he would get together his "team" that would be in the operating room and then meet with us again in about three months, go over everything, and set a firm date for the surgery. He also warned me that the recovery time of this particular surgery is about a year from start to finish. Six months until she would act like herself again and six more months until deemed "fully recovered." Gulp.

So we left the hospital to head home and we had just gotten on Rt 1 in Boston when my cell rang. It was the GI doc. The radiologist who read Tessie's xrays just happened to see the very bottom of her left lung in one of them and it looked like she was developing a pneumonia. They recommended we take Tess to her pediatrician as soon as we got back to Maine.

And the hits just keep on coming.

By the time we got back to Sheila's house it was too late to do anything except get ready for bed. I did talk to Jen on the island since it seemed like she should be in the loop given the fact that she is our island doc and, naturally, got crying while telling her. The next morning we took Tess in to see Dr. Stephenson and while discussing everything we had learned in Boston, I started crying again. He assured me that he would be more worried if I didn't show any emotion after hearing that my daughter needed major surgery. He also said, and this is just another reason why he is awesome, that if weeping mothers bothered him then he was in the wrong profession!

After looking Tessie over and not finding anything to suggest she was coming down with a pneumonia, he still agreed to treat her proactively as a precaution because Boston had really felt like she was developing one. We started her on antibiotics that day.

The next morning she spiked a fever and was sick. Quite sick. Still, I figured that the meds just hadn't had a chance to kick in and I brought her home. For about sixteen hours.

The following morning her fever, which had thankfully gone down the night before so I assumed (there's that word again) that the antibiotics were working, was back even higher than it had been. I called Sheila who called the pediatrician and we were ordered to get back to the mainland pronto and he would meet us at the ER.

At the ER the doc added a second, stronger antibiotic and let us go home to Sheila's with some fairly strict instructions which included definitely NOT GOING BACK TO THE ISLAND. He debated about just admitting her then and there but I basically asked him not to since she was still able to maintain her oxygen levels so well and we had Sheila to help us. Plus, we thought the second antibiotic would do the trick. Needless to say, it didn't. Two antibiotics and they weren't even touching the pneumonia.


Things were getting a bit scary.

She was admitted into Special Care less than 36 hours later and ended up needing to be given oxygen for about 24 hours. Her pediatrician consulted with her Complex Care pediatrician at Children's and, as fate would have it, that doctor has just done a six month study on something called pneumonitis and thought that was what Tess had based on xrays and her symptoms. She suggested a specific course of IV antibiotics and Dr. Stephenson adapted his treatment of Tess accordingly. Like he said, "When the person who actually conducted and wrote the study suggests the best way to treat the patient, you do it."


Tess still got a little worse before she finally turned the corner and myself, Sheila, and even Dr. Stephenson were getting nervous. He later told me that he had discussed with her Boston doc about a plan B treatment if it became necessary but thankfully, plan A worked. Tess spent 3 days in Special Care and once she could maintain her oxygen levels herself, she was moved to a regular room for two more days. She spent a total of five days in the hospital and two more days after that going back in for IV infusions before being allowed to come home. She is still on antibiotics for another seven days while I am on pins and needles waiting to see if she really is going to stay on the road to recovery or decide to throw me a curveball and start to get worse again. I was told that the recovery period for this type of pneumonia is about six weeks.

Six weeks... six months...a year...who knew that time could be such a scary thing?

9 comments:

  1. You are such a wonderful mother. I am praying that all goes well and that you have peace with all that is going on. <3

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  2. Time can be a scary thing.... Thankfully, Tess has you by her side ; ) Hoping for health and peace sooner than later. Love to you all.

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  3. I hate when you think something will just be routine and then BAM. Boo had an MRI that we were sure was going to be negative, nope, it was much worse and she needed spinal surgery. Right after she finally was able to walk independently.

    Keep the faith, you are doing the best you can. Eventually I believe time will be our friend.

    Found you via love that max

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  4. Looking forward to spending some time on this blog - especially as I am a fellow Mainer whose son is having double hip surgery with Dr. M at Children's this winter. They have a great online booklet with tons of info. I'd be happy to send it to you if you'd like. Heather

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  5. My son is also having double hip surgery at Boston Children's early 2013. I've known it was a very good possibility he would need it for years now. We have just been watching and waiting. His hips were stable and they were waiting for him to get a little older. Now they are starting to slip out further. I'm completely terrified!

    Braysmama

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  6. Wow...it's a small world. And Heather, yes, I would LOVE any info you have and I think (based on the M) our kiddos have the same doc at Children's for this. :) My email address should show up in my profile but just in case it's smilinjo33@msn.com
    or you can leave a link here. Thanks so much!!
    ~Joanna

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  7. I think we may have the same doc too. B has been seen by Dr M for about four years now. His first orthopedic surgeon was at Tufts. We went for a second opinion at Children's since all his others docs were there. At Tufts they wanted to do surgery right away. Dr M explained the benefits in waiting especially since his hips were stable. We've been with Dr M since.

    Braysmama

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  8. Dr. M was great! I feel very fortunate that Tess has him as part of her team of docs. Please keep in touch and let me know how your son makes out with his surgery. Good luck!! :)

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  9. First of all, I am sorry. Just sorry that there is so much to take in right now.

    Secondly, I think I'm in LOVE with the orthopedic surgeon you saw. One sure way to this mama's heart is to FEEL. Making a doctor get choked up? Now that's some FEELING right there! :)

    Thirdly, the comments above are a perfect example of why I love the internet. Finding other parents who we have something in common with and sharing our experiences so we can help one another. Awesome!

    Praying for you and Miss Tess.

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