Breathing Easier

During football season, you often see a player on the sidelines sucking in extra oxygen. I never understood why that was helpful to them. They are big strong athletes in top physical condition, why do they need that?  After watching Maggie's long slow recovery, I'm starting to understand it better. It just gives the body a little boost to work more efficiently. Maggie needed it to get back to her baseline. Presumably these guys use it to stay at their peak, Since these athletes are pushing their bodies to the limit, the extra oxygen may help keep them in top physical shape throughout the span of the game. It's the same thing from two different extremes.

 Maggie's issues tend to drag on a little longer than a four hour football game, though. After 6 weeks it seems Maggie has kicked the supplemental oxygen habit. She didn't need it over the weekend, but slipped back on Monday. It's pretty easy to tell when she needs a little help because she gets quite pale and her energy level just drops. This is a pretty picture of her I took while Steve was getting the trach mask set up to give her oxygen the other day. She's not jumping around like normal so I got a good shot of her beautiful face reflecting off the light form her dynavox. It's a good example of how we know even without measuring the levels. (but we did that too)

She got sick the first week of May and basically recovered after about three weeks. But she could not keep her oxygen levels up where they needed to be. The doctor said there were likely areas of collapse. Her lungs were not fully expanding. She said it was like trying to blow up a balloon that's wet inside. It can't be done without a lot of effort and Maggie could not provide the extra effort. She was just too worn out. The supplemental oxygen gave her the boost she needed to get her strength back.

Now she's gone another two days without extra "O's" during the day. (Night time is a different story, but that's normal for her) If she needs it again, fine, but the fact that she can go two full days is a sign that this episode is finally winding to a close. And feisty Maggie is back. .

 Maybe we'll go hit the 49er training camp. She can show the guys a thing or two..

Chest CT

Maggie had to have a chest CT done today. This is part of the ongoing outpatient stuff we are donig to avoid a lengthy hospitalization. So far so good. This morning Maggie had to be sedated for this test, but even with all of that we were in and out in about an hour. That's a new record. We are back at home. If I knew it was going to go this smoothly I would have sent her to school afterward. Instead she's hanging out with me telling me jokes on her talker.

I still get nervous during these tests. I can't help it. We have had far too many surprises - and very few of them good - after they take a closer look. It will be interesting to see what this test shows. We are trying to get to the cause of her repeated infections. She coughs up blood all the time unless she's on antibiotics. It could be irritation that easily gets infected, but with Maggie we just never know what they are going to find. In fact the radiologist will be in for a bit of a surprise. Maggie's anatomy is all screwed up.

When she was born, her esophagus and trachea were connected, which is not supposed to be. That was fixed surgically but there is a lot of scar tissue from that surgery as well as from the tracheostomy. In addition she doesn't really have a functioning right lung. I only learned that about two years ago - a year after the trach was placed. According to the pulmonologist, the lung formed but none of the tissue within it formed. Instead of a functioning lung it's just an empty pouch; further there is no bronchial opening to that right lower area. That answered the riddle why her frequent pneumonias were always on the left side. Wasn't an answer I wanted, but that's what I got.

Whatever they tell me will not surprise me. For all I know all the lost socks in the house could be down there. I'll just put on all some protective gear when the doctor calls with the report in the next few days.

Next stop: hematology. But not for a few weeks.

I'm worn out and it's only noon. I think I'll steal a nap when the nurse arrives

Get yer ice cold Lemonade

I am making lemonade. You know the gig - life gives you lemons....make lemonade.

I was reeling from all the hits yesterday. My surgery tuesday to be followed by Maggie's admission to the hospital on Thursday for 10 days. I decided sitting and stewing were not acceptable, it was time for action.

I talked to my sister Ellen last night. She's a nurse and works in a surgery center that does only shoulders. I asked her about my recovery time and Maggie entering the hospital 48 hours after my surgery and she just said "NO WAY". That confirmed my thoughts and I called pulmonology first thing this AM and told them we need to put it off.. It was only a message and I haven't heard anything in return, but they can't do tests on a patient who's not there.

I told them in a "perfect world" we could put if off to the week of the 22nd which would 1)give me time to heal from my surgery and 2) put us up against Spring Break so Maggie would only miss one week of school. I noted that I don't live in a perfect world and doubted anyone would let me even visit, but a girl can hope. I promised to bring her in immediately if things became emergent, but I really do not think that's going to happen. I'd happily take the week of the 15th  if need be.

I had a brilliant idea last night. We have delayed getting our hardwood floors sanded and refinished because we can't do it with Maggie in the house. The dust would kill her - literally. Since we know we will be out of the house, we are going to arrange to have the floors done while she and I are gone. I got a bid today and it's not too bad. We will just do the downstairs for now. The guy said he can be available on about three or 4 days notice.

you can't keep a good woman down

So my lemonade is working out well. It could certainly be a little sweeter, but I'm working on it.

Dodging the Raindrops

When it rains it pours. And I just felt a drop. 

Maggie left for school this morning doing fine. The night nurse said there were traces of blood when she coughed, as there has been many mornings over the past months. Maggie was happy and anxious to get to school. Before 9:00AM the very calm and professional school nurse called to tell me there was an alarming amount of bleeding. "Alarming." That's not a word she uses very often. Maggie was still "fine" other than this rather dramatice symptom. No fever, brething fine, etc etc. We decided to wait. I called the doctors' office to report this new (but oft repeated) symptom. I jumped in the shower because I knew it was likely that would be my only chance. I checked back at school 30 minutes later and it was the same, so I went to get her. We were home by about 10:15. By noon or so it stopped and she was completely back to normal.

Maggie is fine. She's not "sick", but this is a troubling issue and one we have  wrestled with for months. It comes and goes - but it generally only "goes" with antibiotics and comes back when the course is finished.

I spoke to the doctor who thinks its time for Maggie to be admitted. I actually agree with that. We need to get to the bottom of this issue. But the timing is horrible. The doc said today or tomorrow, but I said I can't.
I am scheduled for shoulder surgery on Tuesday and I just HAVE to get this fixed. She suggested Wednesday, but that's Maggie's 16th birhtday and I can't do that to her. We settled on next Thursday Mar 4th. Maggie will be admnitted for a 10 day stay to get IV antibiotics and have a battery of tests.

That will make me 48 hours post op. After thnking about it for an hour or so I knew I could not possibly do that. I'm going to call in the morning and put it off for another week. It's been months and she's doing fine. I really think we can wait another week or two. I need to be physically strong enough to handle the extra work of having her in the hospital and need to have the stamina to go without regular sleep for several days.

Dealing with Maggie in the hospital is not easy. She is uncomfortable, we don't have our supplies at easy reach and the one to one nursing I have at home is not available. It's ironic, but she gets a lot less nursing in the hospital land those skilled treatments she needs fall to me. 24/7. It's exhausting. Trying to do this one handed will be impossible.

Hopefully we will delay things a week or so. Give some of these rain showers a chance to clear.

In the meantime, can I borrow an umbrella?

Specialist Day

Today is specialist day. That’s always fun. Nothing is wrong, it’s just time. I hoped to get these done over Christmas vacation, but those are coveted appointments and I did not call soon enough.

Maggie, like many kids with special health care needs, has several specialists. Pediatrics is already a specialty, so these are sub-specialists. We have pediatric Pulmonology, urology, neurosurgery, neurology, gastroenterology opthamalogy and others as needed. I am supposed to keep current with all of these so that Maggie’s meds and supplies can flow steadily. It is difficult to do that, especially when she is healthy in a given area. I am definitely of the “if it ain’t broke don’t fix it” school of parenting.

To the extent possible, I try to coordinate a couple of visits on the same day. I can minimize visits and the accompanying hassle by doing this. Besides, we are up there so often with urgent needs, over which I have zero control, that it is nice to exercise control when I can. That’s easier said than done. UCSF is an enormous medical center and these specialists are extremely busy people. Each department has its own layer of bureaucratic hell for patients to wade through.

There has been some attempt to coordinate the pediatric specialists by utilizing a “pediatric specialties” clinic. Makes sense, or it would if all the specialties participated in this clinic. Some do, some don’t. Even the ones that do are inconsistent in their approach. Appointments can be a nightmare.For me getting appointments on one day is a convenience, but I only live a mile away, so I can get there on separate days if need be. Some families come from hundreds of miles away becasue there are so few of these specialists around. If they have to come more than once it's extremely difficult, stressful and expensive.

I called the peds specialty number in mid December and was directed to a separate number for peds Pulmonology. Ok. Pulmonology told me the first available appointment was Jan 12 (two days ago) Ok. Now I need to coordinate this with gastroenterology (GI). Sorry, we don’t’ have any control over their appointments. Sigh. OK. I call the peds specialty number again and connect with Peds GI. They cannot do the 12th because the woman Maggie needs to see only sees patients on Thursdays. Sigh. Really? I am trying to coordinate this with peds Pulmonology. Oh. I can do that for you. REALLY?!?!? Great.

Why can GI control Pulmonology, but the opposite is not true? I do not know and I do not care. Its’ set up.

She asked which appointment should go first and I chose GI. Pulmonology will take longer because Maggie has ongoing infection issues there. In addition, they always run late. GI will be the shorter of the two appointments because Maggie is stable in that area and we will just tweak meds and feeding schedules, and they are always on time.

I do have to give GI a little ribbing however. I received a letter addressed to me indicating (in a rather chiding tone)that my child was overdue for a visit and that it was important to be vigilant about my child’s medical care. According to this letter, my child “Zachary” had not been seen there since January 09. Ok.

I do not have a child named Zachary and we were there in June.

Other than that, it was perfect.

Lucy and Ethel

Maggie had a chest x-ray this morning, which is always an adventure. Inevitably, the x-ray techs are NOT happy when they see Maggie. They always ask if she can sit up on her own. When I say no, they realize they have to get creative. Today was no exception. I have to stay in the room, wear a lead apron and hold Maggie still in these wild positions so they can get the shot they need. It is like playing twister, only it is not a game.

Maggie is not sick, but some symptoms are starting. I know the drill well enough by now that this will continue for a few days and then she will be sick. I cannot let that happen. I have to go pick up #2 son from school on Monday and will be gone for 36 hours. The routine is carefully set, but a sick Maggie is not part of the plan. For once in her life she did this mid week instead of 5:00PM on Friday. Today is clinic day at Pulmonology and we scooted right in there. Sweet.

The doc ordered a chest x-ray just in case that rubber syringe tip she swallowed a month or so ago was the cause of the problem. My heart dropped at that thought. I presume she swallowed it and it’s stuck in her system somewhere; it never crossed my mind that it could be in her LUNGS. She just wanted to be sure, so off we went to radiology.

We were met by two techs I named Lucy and Ethel.

They frowned at Maggie, then looked at each other and frowned again. Lucy asked if Maggie had ever had a chest x-ray before. (Keep in mind Maggie has a trach, and generally they do not put those in without at least a couple of pictures of her chest to show it’s necessary). I just smiled and said, “About 10,000 times.” They looked at the chair to see how they would do it, clucked back and forth and seemed lost. I said, “Look, the way we can do this is put some foam behind her, scoot her forward in the chair, flip the lateral supports back out of the way and I will hold her so you can get the shot. It’s worked before.”

They said that would not work. Ok. I just pushed her into the room. Ethel was VERY concerned about Maggie’s Hannah Montana shirt because it had sparklies on it that are metallic and can show up on x-ray. “That’s ok,” I said, “let’s just take it off.” Lucy then went on for five minutes about how they need a plain t-shirt. I should never have put this shirt on her. “Weeeelllll,” I said “I had no idea we were getting a chest x-ray and don’t generally dress with radiology on my mind and we can always take it off.” That fell flat; my sarcasm was lost on these two. They were buzzing around knocking into each other. She started again with the shirt and losing my patience I said, “Let’s just do this, I’ll take it off her.” (for the 3rd time) “Ok mom* but next time….. “ I stopped her. “Let’s just deal with this time.”

They unhooked all of Maggie’s buckles and supports as I was putting on my lead apron.
‘Wait a minute”, I said, “she’ll fall!” Ethel says” No Mom”* she looks pretty stable to me. I said, “Well she’s not.” I lurched forward to catch Maggie as she started slumping over to the side. Neither even noticed. It was like watching C3PO buzz around; they were smart but oblivious to what was right in front of them. After conferring, they told me a chest x-ray was not going to be possible, and I told them she has done it before and we do not have a choice. More clucking and scurrying back and forth. I said, “Why don’t we try the foam and moving the chair parts like I suggested, it’s worked before.”

They started tossing foam behind Maggie and had me hold her hand above her head, but for some reason only gave me her right hand. I asked her to give me the left hand because I could not reach down and get it without letting go of something important. Not listening, Lucy kept putting the left one on the armrest of the chair. Maggie would move it, of course. I told her again that Maggie could not keep her other hand still and finally made a quick grab for it. I was like a magician pulling the tablecloth out. Now I am standing behind the chair trying to support Maggie in the chair, with no straps as she is pushed forward in the seat with her hands over her head. In addition, I have to make sure my arms are not in the field for the shot. It was very precarious. Lucy and Ethel thought this was a good time to move the entire chair back a few inches and then discuss it. I thought I was going to scream.

We got the shots. The lungs are clear. No foreign bodies. Yay.She needs antibiotics, but that's it.

Lucy and Ethel were high fiving each other. One of them came up to me and said “Try to remember next time she needs an x-ray, tell the tech that pushing her forward in the chair with foam behind her, moving the side things and you holding her hands up really works.”

Really? I will try to remember that.

Oh, and I am not your mom.